What a day..........a day I love but also struggle with since 2018. Today we can say we have a 7 year old. I'm knackered after days of celebrations and my body is ready to rest but she's had the BEST time and truly deserves it. It's not a cliché to say the day she was born was the best day of my life. My body did something I genuinely never thought it would, carry full term +11 days with a natural birth. Considering the abdominal scarring, intestinal malrotation and adhesions. But my body took back the joy in the early hours of her 1st birthday. Hospitalising me after hours of sickness and excruciating pain. Which I put down to pre-wedding nerves, not a bowel obstruction and vovulus. Meaning surgery and recovery from bowel resection, internal bleed and critical care. Weeks before heading home and being reunited. The trauma and sadness remains. Unfortunately returns each year alongside the joy and love at watching my girl grow. It wasn't until this last year that I've learnt that aftercare can be better and support. Heres to my girl. We missed your 1st birthday party and celebrations but we will never miss another ❤️ ❤️Happy birthday to you G ❤️ #surgicaltrauma #personalblog #intestinalmalrotationpregnancy #intestinalmalrotation #abdominalscars #abdominalsurgery #abdominaladhesions #adhesions #criticalcare #volvulusawareness #volvulus #bowelobstruction #boweldiseases #bowelmalrotation
The Malro Fighters Fair Day is fast approaching. Have you made your plans yet? This year we will have intestinal malrotation community speakers, representatives from the IM research community, and a BRAND NEW Malro Fighters Program to announce! Want to be the first to find out what it is? Come join us on August 3rd, 2024 at the Ohio State Fair and find out! Rides, food, and more courtesy of Talley Amusements. Don’t miss your chance to hang out with fellow Malro Fighters! #malrofamilyfunday #ohiostatefair #actionableawareness #takeaction #Malrofighters #nursesweek #nationalnursesday #intestinalmalrotation #malrofightersfoundation #intestinalmalrotationwithvolvulus #community #scholarship #grant #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #malrofighterfriday
Malro Fighter Anna just completed a 5K 5 months post-op her 4TH Abdominal Surgery. Let’s Hear it for Meeting Personal Milestones! Do you have a special achievement you'd like to share? Send us a DM - We love to hear from all Malro Fighters! Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #rarediseaseday #intestinalmalrotationwithvolvulus #community #scholarship #grant #leapyear #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #malrofighterfriday
Intestinal malrotation is defined as a condition that occurs when the intestines do not properly rotate into place within the abdomen. The degree of malrotation and/or presence of a volvulus play a large role in whether the large intestine is also impaired. Many patients experience issues with both the large and small intestines as well as associated motility issues. Learn More: https://linktr.ee/malrofightersfoundation #actionableawareness #takeaction #Malrofighters #nursesweek #nationalnursesday #intestinalmalrotation #malrofightersfoundation #intestinalmalrotationwithvolvulus #community #scholarship #grant #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #malrofighterfriday
We’ve decided that shoutouts aren’t enough to thank the nurses who have helped our community members… …So in the spirit of Actionable Awareness and Malro Fighters Helping Malro Fighters… We want YOU to nominate YOUR FAVORITE NURSE to receive a coffee card. Gift cards can be emailed or sent via physical mail. Drop a shoutout in the comments and we will randomly pick up to 10 nurses to receive a gift card. Are you a nurse? Toss your name in the comments and share this post with your friends. We want to recognize the hard work everyone does in the medical world to keep Malro Fighters safe. Learn More: https://linktr.ee/malrofightersfoundation #actionableawareness #takeaction #Malrofighters #nursesweek #nationalnursesday #intestinalmalrotation #malrofightersfoundation #intestinalmalrotationwithvolvulus #community #scholarship #grant #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #malrofighterfriday
Everyone with chronic illness is different, and most people will notice abilities and limitations will change throughout their lives. However, a diagnosis of intestinal malrotation does not automatically mean that you should limit activity. Consistent activity is a great way to treat gut motility! We have many Malro Fighters in our community who participate in a wide range of athletic activities including volleyball, yoga, dance, martial arts, gymnastics, basketball, football, and more. What's most important is knowing your limits. Talk to your doctor if you have any concerns, but regular activity, even if it's only a ten-minute walk daily, is always beneficial. Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #rarediseaseday #intestinalmalrotationwithvolvulus #community #scholarship #grant #leapyear #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #malrofighterfriday
10 years. 10 years ago I was on the verge of starving to death because my intestines had slowly stopped working entirely over the course of a couple of months. All the (many) scans looked normal until one day they caught it: just a sliver of knotted intestine appeared on the CT, hiding behind my liver. Intestinal malrotation. It virtually never presents in adults, so they hadn't been looking for it. Dr. Greenberg at UW fast-tracked my surgery and saved my life. I woke up on May 5, 2014 still unconvinced I would live to see my 27th birthday. It certainly wouldn't be the end of my fight for medical care, and even recovery from this surgery would turn out to be an absolute nightmare, but. 37 is coming soon, and mostly? Mostly I'm just so happy to be here. ❤️
Malro Fighter Kensie has been busy rocking the dance stage these past few weekends! We love seeing our Malro Fighters working hard! Do you have a special achievement you'd like to share? Send us a DM - We love to hear from all Malro Fighters! Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #rarediseaseday #intestinalmalrotationwithvolvulus #community #scholarship #grant #leapyear #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #malrofighterfriday
The 3rd Annual Malro Family Fair Day is only three months away! Make sure to pencil it on your calendar. There is nothing quite like meeting dozens of people in one room who ALL know exactly how you FEEL. Come on out and experience the warmth of Malro Fighters Helping Malro Fighters firsthand! Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #rarediseaseday #intestinalmalrotationwithvolvulus #community #scholarship #grant #leapyear #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #malrofighterfriday
The 3rd Annual Malro Family Fair Day is only three months away! Make sure to pencil it on your calendar. There is nothing quite like meeting dozens of people in one room who ALL know exactly how you FEEL. Come on out and experience the warmth of Malro Fighters Helping Malro Fighters firsthand! Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #rarediseaseday #intestinalmalrotationwithvolvulus #community #scholarship #grant #leapyear #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #malrofighterfriday
Just a century ago, stomach cancer was the leading cause of cancer-related deaths in the United States. Today it only accounts for about 1.8% of all cancer-related deaths in the US. Proof that preventive care works! Always keep an eye on all organs in your digestive system! Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #rarediseaseday #intestinalmalrotationwithvolvulus #community #scholarship #grant #leapyear #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #malrofighterfriday
Hey Caregivers, It's your turn! Who is ready for some #TGIF fun? Let’s play, “You know you are a Malro Fighter caregiver when…” and see what people have to say! Embarrassed? That’s okay we know Malro is not a designer disease, shoot us a DM and we will post your response anonymously. We will start: You know you are a Malro Fighter mom when... You instinctively catch puke in your hands! You know you are a Malro Fighter mom when... You discuss bowel movements over dinner without batting an eye! Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #rarediseaseday #intestinalmalrotationwithvolvulus #community #scholarship #grant #leapyear #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #malrofighterfriday
In honor of Earth Day, here is a fun myth for you: Myth: The Earth's core is hard rock. Truth: In reality, the Earth's inner core is actually squishy, just like our insides! Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #rarediseaseday #intestinalmalrotationwithvolvulus #community #scholarship #grant #leapyear #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #malrofighterfriday
What you see vs what you don’t see. On the outside I try to really hide my pain. I try to live my life the best I can. What you don’t see is: (In order of pics) 1. That I simply bump into a table and it tears my skin off because my skin is so fragile 2. I have no idea where this bruise came from along with the many other bruises on me 3. I got very shaky just from cleaning the kitchen 4. My finger pressed against the fridge while I was filling up a water jug and it tore my skin off… yup… just my skin pressing against it. If you look back at the video you can see it actually left a scar. 5 and 6. My many scars And so much more… You really don’t know what someone else goes through behind closed doors. Be kind to others. Those who are chronically ill really have to put on a face everyday, and they want to be normal, but we know this is our normal and we have to cope with it in ways that works best for us. #awareness #ehlersdanlossyndrome #endometriosis #gastroparesis #intestinalmalrotation #mcas
Sometimes a watering mouth can be annoying, but in reality, it’s a very important sign that your digestive system is working. The body produces a whopping 32 ounces of saliva each day. It plays an important role in the digestive system and helps moisten food so it can easily be swallowed and digested. It also helps reduce infections and protects your teeth. Think of this next time you tell your kids to stop playing with their spit! Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #rarediseaseday #intestinalmalrotationwithvolvulus #community #scholarship #grant #leapyear #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #malrofighterfriday
Would you like to share your story? Send us a DM! Today’s Malro Fighter is Viki Olsen. Viki Olsen is a 50-year-old Malro Fighter who lives in Norway. She works as a physician but had to deal with frequent and severe stomach pain. She spent a lifetime dealing with constipation and lower back issues, but it never scared her. Instead, she focused on her career and other things. However, she officially became a malrotation patient at the age of 47 when she was admitted to the ER with severe stomach pain. Her first CT scan showed it was an obstruction caused by a volvulus which revealed malrotation. The team of surgeons at her local hospital had never performed a LADDs procedure before but they did their best based on the literature they had for guidance. Luckily, they were able to save her life and intestines. 8 months later, Vicky was back in the hospital, but this time she had an obstruction as a result of adhesions from the previous surgery. Once again her colleagues worked hard to save her life and intestines. However, just a few weeks later she experienced an obstruction, and had another surgery in Oslo to complete the LADDs, but her condition deteriorated considerably. It was clear the health care system in Norway had nothing more to offer her, leaving her feeling scared, abandoned, and also disappointed over the lack of knowledge about her condition. In despair, she did her own research and discovered the groundbreaking “Gut Malrotation Corrective Surgery”. She knew immediately this was the solution she needed and was lucky enough to come in contact with Dr. Giuseppe d´Amico. She is now 6-weeks post-surgery and doing well with no more bloating and constipation. She is finally able to eat solids and is humbled and touched by all the support she receives. Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #rarediseaseday #intestinalmalrotationwithvolvulus #community #scholarship #grant #leapyear #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #malrofighterfriday
Many people think that exercise should be avoided after eating, but light exercise can actually aid in the digestive process. Walking for 10 to 20 minutes following meals can stimulate the stomach and intestines. This in turn quickens the digestive process and pushes food through the body more efficiently. Malro Fighters who struggle with digestion might want to try a walk after dinner and note any differences they feel. As always, every Malro Fighter is different, so consult with your doctor if you have any concerns. Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #rarediseaseday #intestinalmalrotationwithvolvulus #community #scholarship #grant #leapyear #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #malrofighterfriday
In the spirit of #TGIF let’s have some fun… Let’s play, “You know you are a Malro Fighter when…” and see what people have to say! Embarrassed? That’s okay we know Malro is not a designer disease, shoot us a DM and we will post your response anonymously. We will start: You know you are a Malro Fighter when… You carry an extra pair of undies in your car. You know you are a Malro Fighter when… You scout every location for a restroom. Caregivers, don’t worry, next Friday we will play, “You know you are a Malro Mom when…” just for you! Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #rarediseaseday #intestinalmalrotationwithvolvulus #community #scholarship #grant #leapyear #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #malrofighterfriday
Discover the inspiring story of Dr. Sydney Martinez, assistant professor of epidemiology at #HudsonCollege, whose personal journey fueled a mission to drive change and hope in healthcare. From a concerned parent to a leading advocate and researcher, her dedication to understanding and advocating for those with intestinal malrotation is awe-inspiring. Her personal connection to intestinal malrotation has fueled groundbreaking research, including the founding of IMPOWER, the first national patient registry for this condition. Read more at publichealth.ouhsc.edu/news #PublicHealthChampion #IntestinalMalrotation #ResearchAdvocate
Are you making summer plans yet? Don’t forget to drop August 3rd, 2024 into the calendar, as the official date of the Malro Family Fair Day at the Ohio State Fair. Malro Family Fair Day is returning to the weekend to make travel plans easier so we can see ALL of your faces. Ferris wheels, funnel cake, and more from Talley Amusements There’s no better way to close the summer than with fellow Malro Fighters at the fair! #intestinalmalrotation #malrofighters #malrofightersfoundation #intestinalmalrotationwithvolvulus #community #scholarship #grant #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #malrofamilyfairday
Many patients feel they can’t speak up at medical appointments, but in reality, you are your best advocate. When you sit in a specialist’s office, they are the specialists in medicine, but you are the specialist when it comes to your symptoms. The best way to self-advocate is by educating yourself. LIKE and FOLLOW Malro Fighters to make sure you never miss new information. Click the link to find the latest medical journals about Intestinal Malrotation. Join patient groups to learn from others. Read journal articles. Participate and attend research conferences. Our voices aren’t small when they are combined! Educate yourself, and then bring that knowledge into your doctor’s office. You are the most important member of your medical team. Don’t be afraid to speak up! Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #rarediseaseday #intestinalmalrotationwithvolvulus #community #scholarship #grant #leapyear #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #malrofighterfriday
The GROklahoma Podcast Show Presents: Motherhood and Medicine: Navigating Intestinal Malrotation Together with Scientific Expertise and Maternal Compassion – The One with Dr. Martinez and Dr. Corcoran: Episode 7 (2024) Being a new mom is tough but imagine having a newborn with health challenges beyond the ordinary. Today, we introduce you to Dr. Sydney Martinez and Dr. Katie Corcoran, two moms and researchers deeply immersed in unraveling the complexities of intestinal malrotation. Dr. Sydney Martinez, an Assistant Professor in Epidemiology at the University of Oklahoma Health Sciences Center, and Dr. Katie Corcoran, a prolific researcher and professor of sociology at West Virginia University, share their tales of resilience, determination, and the power of community in tackling this condition. Intestinal malrotation, a rare condition diagnosed within two weeks of birth in both their newborns, involves the intestines failing to rotate correctly during development, leading to severe gastrointestinal issues. In this riveting episode, they recount their journey of resilience and community-driven research through the Intestinal Malrotation Patient Outcomes and Wellness Registry (IMPOWER). Through their unique blend of scientific expertise and maternal compassion, they challenge the medical community's assumptions about how surgical outcomes do not always translate to positive patient experiences, highlighting the need for a holistic approach to understanding and addressing malrotation. In this episode, discover how community support has been pivotal in driving meaningful, patient-driven research through IMPOWER, and explore the potential of emerging technology in uncovering patterns related to intestinal malrotation. Connect with their malrotation community below: Facebook: https://www.facebook.com/profile.php?id=61552410669693&mibextid=dGKdO6 Email: [email protected] IMPOWER paper: https://rdcu.be/dBLbV #GROklahomaPodcast #TheGROklahomaPodcastShow #ClinicalResearchOK #TranslationalResearchOK #SoonerState #SoonerBoomer #OUHSC #OSCTR #IntestinalMalrotation #MalrotationResearch #PostSurgeryOutcomes #MedicalResearch #PatientAdvocacy
Today’s Malro Fighter Friday feature is Abel. In 2014 I gave birth to my little boy Abel. He was a very healthy-looking baby 9 lbs 7 oz! He was a breastfed baby and did not miss a feeding. 5 days later he seemed a lot less active than usual. He would eat but not for long and when he did feed he would spit most of it up. I was a first-time mommy, but my family was over so I asked for opinions. Everyone told me it was normal. I knew something was wrong because even with him being 5 days old he was not himself. He became more and more lethargic. He vomited so much green and yellow, that mixed with his being lethargic ( as much as a baby would show) I knew something more was going on. I brought him to the local hospital and they immediately took him in. There were about 6 nurses who attempted to put in an IV but failed due to him being dehydrated. From his symptoms alone they transported him to Brenner Children's Hospital. At that point, I was extremely sick with worry and hopelessness. At Brenners, they did numerous tests, lab work; they even did a lumbar puncture. I just knew this was going to be the end for my baby. They did one last thing which was a GI test and abdominal x-rays. They finally had their diagnosis. and he had to be rushed to undergo emergency surgery. They were able to untangle his intestines and arrange his system to where it could maybe help prevent it from happening again. He is 9 years old, almost 10 and I thank all things greater that he is alive and thriving. He does struggle with ongoing GI problems and I hope that one day his belly will be able to function to its full capacity. Raising awareness of malrotation is important. I am happy to see Malro Fighters and Warriors coming together and supporting each other! Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #rarediseaseday #intestinalmalrotationwithvolvulus #community #scholarship #grant #leapyear #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #malrofigthterfriday
Calling all researchers, advocates, and curious minds! Discover the latest advancements in intestinal malrotation research during the Intestinal Malrotation Research Alliance Annual Meeting on March 26-27, 2024. Dive into cutting-edge research and advocacy for those impacted by this condition. Register at publichealth.ouhsc.edu for free access to invaluable insights and collaborations. Let's make a difference together! #IntestinalMalrotation #ResearchAlliance #VirtualMeeting
Move for Malro Medals 🏅 will be shipping by the month’s end! Medals will be shipped to your GiveButter registered address. If you’ve had a change in address or need your medal to shipped to another address- please spam your team name, number of registered participants and address so that we can update our shipping roster. Congratulations, everyone! 🎉 Onward to more progress for the IM community. #intestinalmalrotation #moveformalro #imstrong #volvulus #shortbowelsyndrome
Many people associate heavy lifting with hernias, but there are a lot of reasons why people develop hernias including: - Increased abdominal wall pressure - Weak spots in the abdominal wall - Straining during bowel movements or urination - Chronic coughing - Pregnancy - Obesity - Strenuous Activity Hernias are common post-surgery complications, so always be aware of the common symptoms, which include a bulge near the public bone, burning near the bulge, pain or groin discomfort, worsening pain, and difficulty with bowel movements. Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #rarediseaseday #intestinalmalrotationwithvolvulus #community #scholarship #grant #leapyear #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #mythmonday
A Feeding Tube is a device used to supply nutrition to patients incapable of doing so through the mouth or have issues in swallowing. At Porvoo Transition Care Centre, we offer assistance for patients who require feeding tube. Please contact Porvoo Transition Care: + 91 9873939777, +91 7827975799 www.porvootransitioncare.com #FeedingTube #FeedingTubePad #FeedingTubeAwareness #IntestinAlmalrotation #InvisibleIllness #TubiePads #TubieLife #FeedingTubeDependent #PorvooTransitionCare
Despite the popular kids' rhyme about “magical fruit,” a cup of baked beans might not be why you feel bloated and gassy. Dairy products are known to cause extensive gas production because of the presence of lactose. As we age, our bodies become even less able to absorb this natural sugar found in milk. Therefore, before giving up beans, it might be time to look into lactose-free products. Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #rarediseaseday #intestinalmalrotationwithvolvulus #community #scholarship #grant #leapyear #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #mythmonday
Early detection is vital for infants! Keep an eye out for symptoms like persistent vomiting, abdominal pain, and swelling. Prompt medical attention is crucial for proper diagnosis and treatment. Talk to our Pediatric Surgeon and pediatric robotic surgeon - Dr. Geeta Kekre For more details, Call: +9619205178 Visit: https://drgeetakekre.com/ . #intestinalmalrotation #intestinalmalrotationinbabies #intestinalmalrotationtreatment #intestinalmalrotationsurgery #intestinalmalrotationsymptoms #intestinalmalrotationcramps #pediatricsurgeon #drgeetakekre #pune
As it's Mother's Day, it seems only fitting to celebrate the amazing girl who made me a mother. Having known I had "dodgy" insides I never thought I'd be a mum, let alone birth naturally. The day I knew I was carrying G I felt super human. No one seemed concerned around previous surgeries or internal issues with the malrotation (probably because no-one really knew what I was talking about). So I carried her to full term +11 days. My gorgeous girl was here with a little assistance at delivery. A healthy 7lb. My one regret is only taking one picture of my bump. I thought I'd go on to carry again and be able to capture more. Actually embrace the pregnancy and not just crack on with work and life. So here's to G ❤️ the kindest and caring girl, who looks after me and keeps me going without even realising 🥰 #personalblog #mothersday #perfectgift #abdominalscars #intestinalmalrotation #intestinalmalrotationawareness #intestinalmalrotationpregnancy #chronicillness #pregnancy #babybump #motheranddaughter
Believe it or not, your teeth are part of your digestive system because they are responsible for breaking down food so that it’s safe to swallow and easier to digest. This means the digestive process can play a role in your dental health. Acid reflux is well-documented as harmful to teeth as it can eat away the enamel on teeth leaving them more susceptible to cavities. Additionally, reflux can disturb the oral microbiome diversity leading to other related issues. Since saliva is swallowed, this can lead to bacterial imbalance in the gut as well. Other GI diseases such as ulcers can lead to bad breath due to the presence of certain bacteria. Inflammatory bowel diseases can lead to bleeding gums, mouth sores, and other oral health issues. In addition, malnutrition has been linked to dental decay, and many people with chronic digestive issues have trouble absorbing nutrients. For this reason, it’s important for patients with chronic digestive issues to always keep a close eye on their dental health. Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #intestinalmalrotationwithvolvulus #community #scholarship #grant #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #mythmonday
Today is Rare Disease Awareness Day. Landon is RARE. He has 3 rare diseases. Landon has a very rare genetic neuro developmental. It’s so rare that it doesn’t have an actual name, it’s identified by the gene it’s located on. It’s called MAPK8IP3. Current estimates are around 30 people in the entire world with this genetic condition and it wasn’t discovered until 2012. This explains Landon’s developmental delays, his fine and gross motor delays along with swallowing disorders and many of the people with this genetic disorder also have childhood apraxia of speech, like Landon does. Some kids present with severe symptoms and some more mild and all in between. There is no cure. Things like therapy do help. And research is being done. Landon also has hypogammaglobulinemia. This means that his body does not produce antibodies like it should. Antibodies are needed in order to fight infection. He started receiving IVIG infusions at 2 years old. These infusions give him the antibodies that his body does not make. IVIG is made from numerous plasma donations. He receives infusions every 3-4 weeks. There is no cure. Some children may grow out of this but the majority of people will need infusions for life. Landon also has intestinal malrotation. This is a congenital birth defect, meaning it occurred in the womb. It affects the positioning of a persons intestines. Landon had a major abdominal surgery called a Ladds procedure in 2018 to help with his malrotation. Someone with malrotation is more prone to GI issues and volvulus twisting of the intestines. Landon developed a bowl obstruction in 2018 that resulted in emergency and in 2022 that resolved on its own. It is a serious condition that can be life threatening. Rare Disease is a day to highlight diseases and conditions that are rare and usually very underfunded for research.
🧬 Today is Rare Disease Day! 🧬 Matthew lives with 4 rare diseases but that doesn’t stop him from smiling while standing tall in his @zingstanders 😍 📸 @matthew8pjourney ❓Do you know someone who lives with a rare disease or genetic condition? Learn about these #RareDiseaseDay facts and help spread awareness. Comment below if you are a #RareDiseaseWarrior and share your story with us. 🧬💚 #ShowYourStripes 🦓 Rare Disease Facts: 🔸300 million people worldwide are living with a rare disease. 🔸Estimated 200 rare cancers. 🔸Over 6,000+ different rare diseases. 🔸72% of rare diseases are genetic. 🔸70% of those genetic rare disease start in childhood. 🔸5% of the worldwide population is affected by a rare disease. 🔸 1 in 5 cancers is rare and there is an estimated 200 rare cancers. 🧬 Learn more @rarediseasedayofficial @rarediseasedayus 📚Facts ➡️ www.rarediseaseday.org • • • #ZingStanders #standingframe #Zing #RareDisease #RareDiseaseDay2024 #RedefineRARE #RareDiseases #showyourgenes #lightupforrare #disabilityforlife #raregeneticdisorder #rarechromosomedisorder #chromosomedisorder #chromosome8p #invdupdel8p #hipmobility #hipsurveillance #Hipabduction #agenesisofthecorpuscallosum #intestinalmalrotation #cerebralpalsykids #cerebralpalsyawareness #cerebralpalsy #hypotoniaawareness #centraladrenalinsuffiency
🧬 Today is Rare Disease Day! 🧬 Matthew lives with 4 rare diseases but that doesn’t stop him from smiling while standing tall in his @zingstanders 😍📸 @matthew8pjourney ❓Do you know someone who lives with a rare disease or genetic condition? Learn about these #RareDiseaseDay facts and help spread awareness. Comment below if you are a #RareDiseaseWarrior and share your story with us. 🧬💚 #ShowYourStripes 🦓 Rare Disease Facts: 🔸300 million people worldwide are living with a rare disease. 🔸Estimated 200 rare cancers. 🔸Over 6,000+ different rare diseases. 🔸72% of rare diseases are genetic. 🔸70% of those genetic rare disease start in childhood. 🔸5% of the worldwide population is affected by a rare disease. 🔸 1 in 5 cancers is rare and there is an estimated 200 rare cancers. 🧬 Learn more @rarediseasedayofficial @rarediseasedayus 📚Facts ➡️ www.rarediseaseday.org • • • #ZingStanders #standingframe #Zing #RareDisease #RareDiseaseDay2024 #RedefineRARE #RareDiseases #showyourgenes #lightupforrare #disabilityforlife #raregeneticdisorder #rarechromosomedisorder #chromosomedisorder #chromosome8p #invdupdel8p #hipmobility #hipsurveillance #Hipabduction #agenesisofthecorpuscallosum #intestinalmalrotation #cerebralpalsykids #cerebralpalsyawareness #cerebralpalsy #hypotoniaawareness #centraladrenalinsuffiency
Today is Rare Disease Day- a day that also coincides with the FINAL day of Move for Malro. We’ve worked so hard over the past 6 weeks to support the continuation of support and research for those whose lives have been touched by intestinal malrotation. As a community we celebrate Rare Disease Day. The jury is still out- is IM rare or rarely diagnosed? 💚🩵💛 We have more to learn and in the meantime we’re here as an organization to meet you where you are NOW. Thank you for your ongoing support of IMF and for helping to move the community forward through Move for Malro. Today we’ll join in on the conversation and wear our stripes proudly. We are the 300 million… #raredisease #rarefiseaseday #moveformalro #intestinalmalrotation #imstrong #volvulus #sbs #shortgut #shortgutsowhat
#rarediseaseday ❤️ The diseases that do not have the awareness out there that they should! Intestinal Malrotation is a birth defect, still not being detected and treated at birth because Doctors still don’t know what it is. If more awareness was given to diseases like this, millions of lives would be saved. Quality of life would be different, and us malro fighters would have a greater chance at succeeding in life ✌🏻 #intestinalhealth #intestinalfailure #intestinaldysmotility #intestinalmalrotation #malrotationawareness #malro #malrotation #malrotationwithvolvulus #guthealth #guthealthmatters #illness #invisibleillness #hiddendisability #disability #awareness #feedingtube #feedingtubeawareness #feedingtubessavelives #feedingtubes #support #medical #health #raisingawareness #disease #unique #hospital #operations #surgery #awarenessday
Today is Rare Disease Day. An estimated 1 in 2,000 people suffer from symptomatic Intestinal Malrotation. We call these people Malro Fighters. The Malro Fighters Foundation wants to celebrate all of our Malro Fighters by sharing the information YOU wanted your friends and family to hear. We asked Malro Fighters what people need to know about intestinal malrotation…and boy did you show up! Some common themes were: intestinal malrotation is a lifelong condition, surgery is not a cure, infants need to be screened, and doctors need to listen. Now it’s your turn! Celebrate Leap Day by sharing: 29 Things People Need to Know About Intestinal Malrotation This is a 3-Part Post, Make sure you check out all THREE! Here’s to hoping every single Malro Fighter has a good day today! Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #rarediseaseday #intestinalmalrotationwithvolvulus #community #scholarship #grant #leapyear #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #mythmonday
Today is Rare Disease Day. An estimated 1 in 2,000 people suffer from symptomatic Intestinal Malrotation. We call these people Malro Fighters. The Malro Fighters Foundation wants to celebrate all of our Malro Fighters by sharing the information YOU wanted your friends and family to hear. We asked Malro Fighters what people need to know about intestinal malrotation…and boy did you show up! Some common themes were: intestinal malrotation is a lifelong condition, surgery is not a cure, infants need to be screened, and doctors need to listen. Now it’s your turn! Celebrate Leap Day by sharing: 29 Things People Need to Know About Intestinal Malrotation This is a 3-Part Post, Make sure you check out all THREE! Here’s to hoping every single Malro Fighter has a good day today! Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #rarediseaseday #intestinalmalrotationwithvolvulus #community #scholarship #grant #leapyear #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #mythmonday
Today is Rare Disease Day. An estimated 1 in 2,000 people suffer from symptomatic Intestinal Malrotation. We call these people Malro Fighters. The Malro Fighters Foundation wants to celebrate all of our Malro Fighters by sharing the information YOU wanted your friends and family to hear. We asked Malro Fighters what people need to know about intestinal malrotation…and boy did you show up! Some common themes were: intestinal malrotation is a lifelong condition, surgery is not a cure, infants need to be screened, and doctors need to listen. Now it’s your turn! Celebrate Leap Day by sharing: 29 Things People Need to Know About Intestinal Malrotation This is a 3-Part Post, Make sure you check out all THREE! Here’s to hoping every single Malro Fighter has a good day today! Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #rarediseaseday #intestinalmalrotationwithvolvulus #community #scholarship #grant #leapyear #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #mythmonday
✨HAPPY #raredisease Day!✨ 🦄I'm 0.2-1% of the population!🦓 && this is why my bio reads - "Hi, I'll be your disabled 👽 today." Because - I quite literally shouldn't exist. More awareness is needed around INTESTINAL MALROTATION, as it goes misdiagnosed far too often, largely resulting in ☠️. If not caught early, it can be a silent killer. I don't know how I made it to 16 *undiagnosed*, & SURVIVED, they said I was their unicorn 🦄. I'm also a 🦓 with Ehlers Danlos syndrome 🦓 Both conditions need far more recognition and funding! If you have a rare condition, you know how difficult it is to find a doctor that understands it, also knows how to treat you. It's like finding a needle within a haystack. When they found my Intestinal Malrotation, I was already (obviously) very sick. I had been dealing with chronic health issues since birth. See, I had really bad lung issues and I couldn't stop getting pneumonia, my left lung is full of scar tissue to this day. They tested me and I was positive for CF. However, In order for you to have CF both parents have to be carriers. (Cystic Fibrosis) My lungs were a nightmare the first ten years of my life and so therefore my Malrotation slid right under the radar. All of my Intestinal issues were thought to just be CF related. But As I got older my lungs suddenly improved, I stopped needing to be hospitalized for constant pneumonia, and instead was frequently hospitalized for extreme bowel pain/major motility issues. It was at this point that they realized that they had missed Intestinal Malrotation this entire time (and all of my symptoms were so obvious). However, No one at my children's clinics had ever seen anyone survive IM (past the age of a toddler), without having major surgery as a baby. So it's essentially the same thing as EDS, they didn't look for it, because they didn't think that it would exist in a 11 year old girl. I mean that wasn't possible right? She would be ☠️, right? WRONG. WE HAVE TO FIX THIS NARRATIVE. Doctors need to stop stereotyping illnesses!! #imrare #intestinalmalrotation #chronicallyill #chronicillness #disabilityawareness #malro #eds #listentopatients #medicalgaslighting #invisibleillness
Finally!! We may not have found the answer… but at least they are trying to find it!! There is hope yet! … find article here ➡️ https://apple.news/AH9JitivmRaePGLaYek_8dA #science #intestinalmalrotation #malrotation #intestines #twistedbowel #blockages #surgery #gut #guthealth #intestinalhealth #scientists #research #diagnosis #greenbile #vomiting #constipation
You’ll hear from Chantele telling her story in her own voice very soon. She is one of the amazing and brave community members who graciously shared her story during our video production weekend. In the meantime, her story was posted on our blog today. Chantele radiates the passion and fortitude of our community. We were grateful to spend the morning with her, build personal connections and share her story that will resonate forever! To share your story, please go to our website! www.intestinalmalrotation.com #intestinalmalrotation #moveformalro #imstrong #hopearoundeveryturn #volvulus #shortbowelsyndrome #sbs #shortgutsowhat #shortgut
We’re almost done! Stay strong- there is a hero in you 🫵 🙌💚💛🩵 #intestinalmalrotation #moveformalro #imstrong #hopearoundeveryturn #volvulus
A new study published in the Development Journal on February 19, 2024, uncovers the association between environmental chemicals and intestinal malrotation using frog embryos. Research sheds light on disrupted metabolic processes hindering normal gut development. Insights pave the way for targeted interventions to address this congenital condition according to the Children’s Hospital of Pittsburg (CHP) affecting by intestinal malrotation 1 in 500 children in the United States. https://72dragons.health/read-article/442/unraveling-intestinal-malrotation-in-humans:-study-provides-insights-from-frog-embryo-research #IntestinalMalrotation #DevelopmentJournal #FrogEmbryoResearch #EnvironmentalChemicals #GutDevelopment #CongenitalCondition #CHP #PediatricHealth #ChildHealth #MedicalResearch #MetabolicProcesses #HealthcareInsights #PediatricSurgery #HealthInterventions #PublicHealth #MedicalScience #HealthAwareness #ResearchFindings
Many people fear a colectomy/total colectomy (operations that remove all or part of the colon) because they think it will leave them with a stoma (known casually as a poop bag). However, the majority of people who have colon resection surgery do not require a stoma, and for those who do, it may only be temporary while the bowel heals. This is because the small intestines and the remainder of the rectum can often be reattached (a process known as anastomosis) to create a direct line that allows patients to continue stooling normally If this is a concern, speak to your doctor about your individual situation and likely outcomes. Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #intestinalmalrotationwithvolvulus #community #scholarship #grant #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #mythmonday
New findings on intestinal malrotation: Researchers have uncovered a possible link between the herbicide atrazine and disrupted gut rotation in frog embryos, shedding light on the condition seen in about 1 in 500 human births. Atrazine exposure led to an increased frequency of improper intestinal rotation in lab tests, raising concerns about potential impacts on human development. These revelations highlight the need for further investigation into the effects of atrazine, a widely used herbicide in several countries. The study's implications could offer crucial insights into addressing intestinal malrotation and its associated complications. ‼️ EAT REAL FOOD FIRST. No one should be shocked that the millions of chemicals we have added to our society will generally have a negative health impact on the body. Go to www.realfoodfirst.org for more information. ✍🏽: Dyer, Rebecca. (19 February 2024.) Some Babies Are Born With Twisted Insides, And We May Finally Know Why.” https://www.sciencealert.com/some-babies-are-born-with-twisted-insides-and-we-may-finally-know-why ⠀⠀⠀⠀⠀⠀⠀⠀⠀ #intestinalhealth #intestinalmalrotation #sciencealert #wholisticmedicalgroup #drduke #holistichealth #alternativemedicine #holisticnutrition #drdukesformulas #realfoodfirst ⠀⠀⠀⠀⠀⠀⠀⠀⠀
Biologists have used lab-grown frog embryos to understand the underlying cause of human birth anomaly called intestinal malrotation. Find out more at the link in bio. 🚀 #engineering #interestingengineering #labgrown #frogembryos #biologists #humanbirthanomaly #intestinalmalrotation #underlyingcause
It's a Leap Year which means Rare Disease Day is extra special this February. To get ready, we want to hear from you! Drop us a line in the comments or DM us what YOU think everyone needs to know about “Intestinal Malrotation.” It could be some element of the chronic condition, a unique challenge, or anything else you want people to know. All comments will be kept anonymous on slides. We want to share 29 slides on Rare Disease Day that will showcase the unique challenges of our Rare Disease community. We will kick it off with number one, “Intestinal Malrotation can be diagnosed at ANY age.” Your turn! #intestinalmalrotation #malrofighters #malrofightersfoundation #intestinalmalrotationwithvolvulus #community #scholarship #grant #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #rarediseaseday #Feb29th #leapyear
This was an unexpected and incredible surprise today. It’s not every day that you receive mail from the White House. We received the following letter sent to The Intestinal Malrotation Foundation and our leadership team, signed by our President and First Lady. What an honor to be recognized for the work that we’re doing on behalf of the intestinal malrotation community. Building a non-profit is difficult work but this is an incredible reinforcement that we’re moving in big ways for our community. Thank you, @potus and @flotus We are humbled and grateful for your acknowledgement. @malrotationfoundation #intestinalmalrotation #moveformalro #imstrong #hopearoundeveryturn #volvulus #birthdefect #invisibleillness #shortbowelsyndrome #shortgut #shortgutsowhat
Your food is indeed digested in your stomach, but your entire digestive system plays a large role in the process. Nutrients can also be absorbed and digested in your mouth, liver, small intestine, and large intestine. This is partially why many Malro Fighters can live without portions of their digestive tract because other organs can assist. However, since every organ has a role to play in the process, some people with digestive issues may be low on certain nutrients that aren’t as easily absorbed in other locations. It’s a good idea to talk to your physician and test for nutritional deficiencies if you have any concerns. Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #intestinalmalrotationwithvolvulus #community #scholarship #grant #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery
A Feeding Tube is a device used to supply nutrition to patients incapable of doing so through the mouth or have issues in swallowing. At Porvoo Transition Care Centre, we offer assistance for patients who require feeding tube. Please contact Porvoo Transition Care: + 91 9873939777, +91 7827975799 www.porvootransitioncare.com #FeedingTube #FeedingTubePad #FeedingTubeAwareness #IntestinAlmalrotation #InvisibleIllness #TubiePads #TubieLife #FeedingTubeDependent #PorvooTransitionCare
Save the Date! We are excited to announce the 3rd Annual Malro Family Fair Day will be held on August 3rd, 2024 at the Ohio State Fair! Tag your friends and share the post. We can’t wait to see everyone! A special thanks to all of our sponsors: Talley Amusements, Ohio State Fair, Unbroken Physical Therapy, Sci Fit, & Team Lutter. #intestinalmalrotation #malrofighters #malrofightersfoundation #intestinalmalrotationwithvolvulus #community #scholarship #grant #malrofightersscholarship #applynow #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #malrofamilyfairday #talleyamusements #ohiostatefair
This week is feeding tube awareness week and a great time to recognize how many Malro Fighters have depended on enteral feeding to survive. This type of feeding process may include Orogastric, Nasogastric, and Gastrostomy tube feeding - and is a wonderful way to ensure people who need digestive assistance receive the nutrients they need to fight! Drop us a comment with a picture celebrating you or your tubie, and we will add the Awareness Week logo into the corner for you to share! Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #intestinalmalrotationwithvolvulus #community #scholarship #grant #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery #feedingtubeawarenessweek
Members of the intestinal malrotation community often struggle with GERD (Gastroesophageal reflux disease). Many people think GERD medication prevents reflux from occurring, but in reality, most popular treatments only neutralize acid. There are several different types of GERD medications, but PPIs (Protein-pump inhibitors) are the most common. These include popular OTC brands such as Nexium, Prilosec, and Prevacid. These work primarily by neutralizing stomach acids so that any regurgitation is not harmful to the esophagus. They do not stop acid from rising back up into the throat. Therefore, you can still experience the uncomfortable feeling of reflux while on meds, but they can help reduce the long-term effects of acid exposure. In addition, some gastric diseases mimic GERD, which can be the reason why a patient doesn’t respond to treatment. If you are struggling with GERD, it’s important to seek help from a trained physician. Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #intestinalmalrotationwithvolvulus #community #scholarship #grant #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery
Wow, just wow. What a weekend. Thank you to everyone who came out to share their powerful and emotional stories. No one’s heart was left untouched through hearing one another share personal experiences and having the ability to lean in on others who understand. Six incredibly touching stories were shared over two days. Bonds were built. Tears were shed. The people of our community are some of the strongest that I know. My dream is that no one is affected by the hurt, trauma, and loss that is synonymous with intestinal malrotation. I do know one thing with certainty, the stories that were shared and the connections that were made this weekend will change and save lives. Story sharing is powerful both for healing and awareness. It was beautiful to be a part of it. We are so grateful for each and every one of you in our community and for the support system and respect that we share for one another’s journeys. Thank you for that compassion and grace. We promise to never stop fighting for you. -IMF 💚💛🩵 #intestinalmalrotation #intestinalmalrotationawareness #intestinalmalrotationfoundation #volvulus #imstrong #hopearoundeveryturn #moveformalro #shortbowelsyndrome #shortgut #shortgutsowhat
In the spirit of Intestinal Malrotation & Volvulus Awareness Day in January, we are sharing the stories of Malro Fighters all month. This is Malro Fighter Becky’s Story: “My journey started before I can even remember. When I would run I had abdominal pain, nausea/vomiting off and on, and chronic diarrhea. Growing up doctors told me it was all in my head and claimed I had eating disorders. In 2006 I was rushed to the ER for an emergency Appendectomy causing my symptoms to go from bad to worse. In 2007 I was diagnosed with Gastroparesis. In April 2010 I had a gastric stimulator implanted and once again instead of getting better, I started vomiting nonstop daily. There were days I was vomiting 30-50 times a day. By December 2010 I was sent to surgery to have a feeding tube placed. Less than 12 hours after coming home I was rushed to the hospital because I was vomiting up tube feeds and became dehydrated. The tube feeds were stopped and I was placed on TPN and IV fluids. For the next 13 months, I stayed on TPN with lots of hospital stays for sepsis and uncontrollable vomiting. I switched medical facilities to get a second opinion and was told once again I had Gastroparesis. In January 2012 at the age of 29, I had a total gastrectomy, and when I woke up from surgery the surgeon told me he realized I had IM so he did a LADDS procedure, removed the gastric stimulator, placed another feeding tube, and placed a port for TPN/Fluids. Since having surgery in 2012 I have continued getting sick, was on TPN till 2019, coded on my husband, had a few vitamin deficiency-induced seizures, have had 13+ additional surgeries, and lost my mother in November 2020 BUT we got our silver lining on August 25, 2020, when we ADOPTED OUR SON. I still struggle daily with but my faith is strong and I have the most amazing family and friends supporting me.” Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #intestinalmalrotationwithvolvulus #community #scholarship #grant #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery
In the spirit of Intestinal Malrotation & Volvulus Awareness Day in January, we are sharing the stories of Malro Fighters all month. Everyone who shares a story will receive a FREE Malro Fighters sticker. In addition, we will offer free giveaways all month - so keep an eye out for special promotions! Make sure to LIKE and FOLLOW us for all updates. DM us your stories so we can celebrate January with the faces of EVERY single MALRO FIGHTER in our community. This is Malro Fighter Lora’s Story: “I was diagnosed at age 30, while pregnant with my daughter. Around 3 months I experienced sharp pain in my abdomen and it took them a week long hospital visit to diagnose me. I had my first open surgery (ladds). Three months later scar tissue wrapped around my intestines and I had my second open surgery at 6 months pregnant. My daughter was born, healthy and happy right on schedule! I felt great for ten years afterward and then felt sick and had the same pain while on a family vacation (thankfully not too far from a hospital). Had my third open surgery where most of my colon was removed. Four years later, I had major complications from a hysterectomy surgery related to my intestines. I’m now out of the woods and in what I call malro remission. I’m planning to stay in this state for the rest of a long healthy life! I’m so grateful for this group. They’ve gotten me through some very hard times. Having other humans who have experienced the same difficulties is invaluable. I’m forever grateful for this community.” Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #intestinalmalrotationwithvolvulus #community #scholarship #grant #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery
In the spirit of Intestinal Malrotation & Volvulus Awareness Day in January, we are sharing the stories of Malro Fighters all month. Everyone who shares a story will receive a FREE Malro Fighters sticker. In addition, we will offer free giveaways all month - so keep an eye out for special promotions! Make sure to LIKE and FOLLOW us for all updates. DM us your stories so we can celebrate January with the faces of EVERY single MALRO FIGHTER in our community. This is Malro Fighter Laura’s Story: I'm 37, married mum of 1 from Sheffield in England. I was born 8 weeks premature very poorly. After many tests, exploratory surgery was done. Where the malrotation was found. Further surgery at 8 months for adhesion removal and repositioning. I had a great childhood, teens, and early adulthood. Suffering continuously with loose bowels and pain but "learned" to live with it as I knew no different. I carried and laboured naturally my beautiful daughter. No one seemed concerned about my history when I mentioned it. Sadly in 2018, on my daughter's 1st birthday and the day before our wedding, I was taken very ill. Surgery was done, a section of small bowel was removed and the volvulus was sorted. I was back at work after 6 months and got back to normal. All fine and living life. Sadly 2023 wasn't so kind after 6 admissions to the hospital throughout the year. Further surgery and conservative treatment for further obstructions. NG tube etc. 2024 has started better, managing the ongoing adhesional pain with the help of our GPs and accepting possible more admissions due to all the adhesions, incisional hernia, and chronically dilated sections. Very thankful for our NHS and caring hospital staff. Hopeful for a stronger year. Love to all other Malro Fighters! Xx Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #intestinalmalrotationwithvolvulus #community #scholarship #grant #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery
What is actionable awareness? It’s the action of actually creating awareness. Words are cheap, but actions are irrefutable. Before the Malro Fighters Foundation was formed, Taylor and Dr. Kareem sat down to discuss a vision for the foundation and associated goals. Dr. Kareem was firm about the one goal he has had for decades: to create a program that assists intestinal malrotation patients via scholarships. Today, we can make that dream a reality. In that spirit, we proudly announce the inaugural recipient of our Malro Fighters Scholarship Award: Melissa Lowe. Melissa has struggled with misdiagnosed symptoms for most of her life. Her struggle has inspired her to switch careers and become a nurse. We are proud to assist by offering her a scholarship that will be placed towards her winter tuition. Our community is stronger when we work together, and we’re extremely honored to be part of this Malro Fighter’s journey. Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #intestinalmalrotationwithvolvulus #community #scholarship #grant #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery
Are you ready to spread the word about intestinal malrotation? We are ready to help make that possible. Below you will find a simple but effective flyer that explains the basics of intestinal malrotation. Post it in medical offices, hand it to your physicians, and SHARE it on social media. Everyone who shares it will be entered to win a FREE merch item of their choice. All winners for each promotion will be announced at the end of the month. As a general reminder, if your share is not public - we cannot see you as an entrant! Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #intestinalmalrotationwithvolvulus #community #scholarship #grant #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery
Many people believe that if you can stool, then you aren't experiencing a bowel obstruction. In reality, where the bowel obstruction is located and how serious it is determines if stooling is possible. Many people experiencing partial bowel obstructions can have a bowel movement. Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #intestinalmalrotationwithvolvulus #community #scholarship #grant #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery
*TW: acutely unwell & intubated baby (pics 2&3)* This is Coralie, & this is her scar. It tells her story. Not only was she born prematurely, but she also had malrotation. 15-21st January has been Intestinal Malrotation Awareness Week. Malrotation is where the bowel is positioned incorrectly inside a person's abdomen. It happens in the womb, so people are born with it. The positioning of the bowels means they are prone to twist on themselves - called volvulus. Volvulus can be fatal, because when the bowel twists it loses its blood supply & begins to die. Some people can live with malrotation for years with no problems, but volvulus can happen at any time. We didn't know about Coralie's malrotation - unfortunately it wasn't seen on a scan, & was missed during her first surgery. This had devastating consequences - after we'd had her home from NICU for a week, she developed volvulus & we had to rush her to A&E. That was the scariest day of my life. We came so close to losing her. The surgical team were on stand-by to operate in the ED as they weren't sure she'd make it to theatre. Thankfully, she did. Unfortunately, she lost 75% of her small bowel. Now she has short bowel syndrome - which will affect her for the rest of her life - but is doing very well. She spent 36 days on PICU & 24 more days rehabilitating on a gastro ward. She went through unimaginable pain, opiate addiction/weaning, countless lines & tests, infections, horrific swelling... the first week was touch & go. Things could've been worse, but I wouldn't wish what happened on anyone. The aim of this week is to spread awareness, so that everyone can be aware of the signs & act quickly. Things to look out for: ❗dark green (bilious) vomiting ❗stomach distension ❗frequent vomiting ❗constipation ❗pain Coralie didn't have green vomits (the 'cardinal sign') but she had the rest. My DMs are open for anyone going through similar x #intestinalmalrotationawareness #intestinalmalrotation #volvulus #malrotation #malrotationawareness #neonatalsurgery #nicu #picu #laparotomy #baby #intensivecare #shortgutsyndrome #shortbowelsyndrome #malrotationwithvolvulus #sbs #intestinalfailure #neonatalif
As we continue to raise actionable awareness, it’s important to provide shareable information that can help raise the profile of Intestinal Malrotation. Keep an eye out for more infographics this month that break down Intestinal Malrotation into easily digestible terms. In the spirit of giving back, everyone who comments or shares this post will be entered into a drawing for a FREE Malro Fighters Sticker or Vinyl Car Decal. Winner’s choice! In the meantime, remember to DM us your stories so we can celebrate January with the faces of EVERY single MALRO FIGHTER in our community. Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #intestinalmalrotationwithvolvulus #community #scholarship #grant #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery
Today is intestinal Malrotation Awareness Day. Baylor is our 16 month old who was born with Intestinal Malrotation. She has had 2 open abdominal surgeries and is the toughest girl I know. Her symptoms were persistent abdominal pain and problems passing gas and stool which progressed to cessation of stool, vomiting bile, and lethargy. Please know the signs and be persistent if you suspect abnormalities with your child. We were blessed to have the access to care that we had. There are so many whose diagnosis gets missed until it is too late. #intestinalmalrotation #intestinalmalrotationawarenessday #imstrong #worldintestinalmalrotationweek
In the spirit of Intestinal Malrotation & Volvulus Awareness Day in January, we are sharing the stories of Malro Fighters all month. Everyone who shares a story will receive a FREE Malro Fighters sticker. In addition, we will offer free giveaways all month - so keep an eye out for special promotions! Make sure to LIKE and FOLLOW us for all updates. DM us your stories so we can celebrate January with the faces of EVERY single MALRO FIGHTER in our community. This is Malro Fighter Eli’s Story: “Our son, Elijah Robert, was born on 9/9/2020. At just two weeks old he started vomiting highlighter yellow vomit. We took him to the ER, and had a fantastic radiologist who let me stay in the room with him while she performed his upper GI study with contrast. She explained everything to me and told me that without a doubt, he had Intestinal Malrotation, and why she knew this. I could watch as the dye dropped to his lower right quadrant on the screen, instead of making a “C curve” towards the center of his belly after leaving his stomach. We had several surgeons try to dismiss the possibility of malrotation, but if it weren’t for the radiologist who explained everything she saw to me in real-time, I wouldn’t have known to advocate for him after the test. We stood our ground and spoke up. The second surgeon ended up listening to us after admitting that “they had missed something”, and she repeated his GI study. He was in the OR two hours later having an emergency Ladd’s surgery. Elijah is now 3 years old, and keeps us on our toes! We love him so much! I’m eternally grateful for his radiologist who gifted me with so much information and education during his scan. If it weren’t for her I’m certain they would have discharged him home with a volvulus. He is here today because of her. Eli is our malro warrior.” Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #intestinalmalrotationwithvolvulus #community #scholarship #grant #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery
January 15th also marks Intestinal Malrotation Awareness Day! It’s been almost 5 years since my surgery, Ladd’s Procedure, & I am SO grateful for it! Sometimes it’s hard for me to believe the quality of life I once had - then spending a month in the hospital, using a walker to get around, the PICC Line, an NG tube, etc. But our God is so good. And our bodies are really incredible - they can do (and heal from) so much more than we think, & I will never take that for granted! 🤎💪🏼 #intestinalmalrotationawareness #intestinalmalrotation #moveformalro #raredisease
It’s TODAY. Intestinal Malrotation Awareness Day. A day to reflect on our journey and the journeys of the ones that we love 💚💛🩵 Everyday, we push through the pain and trauma that has left us forever changed- but today we come together to acknowledge that we are not alone and that there is still so much work to be done for the diagnostics, treatment overall management of IM. Today connects us around the world 🌎 It starts our first annual International Awareness Week. We care about our brothers and sisters around the globe and realize we are all sharing the same stories, setbacks and challenges. We want to acknowledge the work that we’re doing is that that can be replicated and penetrate care centers and providers around the world. We are working for everyone. Today is the last day to sign up for Move for Malro a physical way to connect with one another, despite our distance. Registration is free. Fundraising is optional and awareness is everything. We encourage you to join us - bring along your friends and family and spread the message of IM- the forgotten diagnosis. 💚💛🩵 https://givebutter.com/intestinalmalrotation www.intestinalmalrotation.com Share your progress. Share your story. Tag us so that we can an cheer for you as we reach our goals together 🌎🫶💪 #intestinalmalrotation #imstrong #moveformalro #volvulus #shortgutsowhat #inmemoryofIMloss
Today is Intestinal Malrotation & Volvulus Awareness Day. As we’ve mentioned, this day was founded to honor the memory of Mya Brown, who lost her life far too young. There are only two things we ask of you today: 1. Share this informational flyer to help spread awareness and save the lives of fellow Malro Fighters. 2.) If you can, take 2 minutes of silence to honor all of the Malro Angels in our community. To the Malro Fighters community- This is YOUR day. Celebrate your victories, remember the ones we've lost, and keep pushing for actionable awareness. Learn More: https://linktr.ee/malrofightersfoundation #intestinalmalrotation #malrofighters #malrofightersfoundation #intestinalmalrotationwithvolvulus #community #scholarship #grant #malrofightersscholarship #applynow #intestinalmalrotationandvolvulusawarenessday #malrofightershelpingmalrofighters #gutmalrotationcorrectionsurgery
My 5 puncture wounds! Surgery was a success, and I still get to keep my appendix (it’s just in the top left epigastric instead of the bottom right now, haha). Excited to start feeling myself for the first time. Living life without chronic abdominal pain is something that I only dreamed of, and now should be a reality once I heal up! Excited to see what I am capable of when my life isn’t dictated by abdominal pain and if I remembered to bring my morphine pills with me when leaving the house. Will be officially morphine free !! Woohoo!! #laparoscopicsurgery #malrotation #intestinalmalrotation #laddsprocedure