National MALS Foundation Board of Trustees

My life’s passion and work has been in some form of patient/client centered care. First as a Certified Massage Therapist trained in various clinical and relaxation techniques, transitioning from a self employed private office setting to volunteering my services for palliative inpatient and home care patients. I continue with that service-based commitment by volunteering in hospice care, with an expertise in acute impatient vigils and facilitation of bereavement support groups. Currently working part-time for many years at an interventional pain management surgical center. It would be my 20 year old son who would need my help advocating for his health, healing and wellbeing; this is personal. His MALS journey and mine started with him feeling as if his heart was too big for his chest. Then came the night he had a sudden onset of severe chest pain and upper gastrointestinal unpleasantries resulting in him being admitted to the hospital. I reassured him I would be by his side every step of the way and do what is needed to help him. Like many other parents, there was an urgency for wanting to know what was causing my child all of his acute, painful symptoms and to fix the issue as soon as possible. After many Doctor visits, months of various tests and misdiagnoses, it was a mesenteric duplex ultrasound that revealed he had Median Arcuate Ligament Syndrome (MALS). I was so relieved and so was he to finally get an answer and a treatment plan. He had laparoscopic surgery to correct the anatomical structural issue of the diaphragm known as a decompression, or surgical release of the celiac artery with neurolysis of the celiac nerve plexus. I care deeply for those of you who are on this overwhelming journey. To me it’s important to give back, share my gifts in creating an environment for positive changes and to see the ripples manifest in ways that help people overcome the challenges and difficulties MALS afflicts and inflicts. I feel grateful and blessed to be part of this organization in helping to spread awareness and hope.  

I’m the Vice President at the National MALS Foundation. As far back as I can remember, growing up in the beautiful state of Maryland, I always had issues with eating and had a pain in my side and a feeling of lightheadedness when running or doing intense exercise. I just figured this was normal. After high school, I joined the U.S. Army, after which I earned my Bachelor of Science in Social Work in Tennessee and my Masters of Social Work in Illinois. I then moved to the Florida Keys where my journey to a MALS diagnosis began. My symptoms worsened and I sought treatment. Doctors told me I might have multiple sclerosis, but no one seemed to know what was really wrong--they just ran expensive tests that were always “normal.” So, I stopped looking and kept living. Years went by and all I knew was that I was young, thin, athletic, in shape, and appeared to be healthy...yet, I had pain when eating, chest pressure like an elephant was sitting on me, blood pressure that was out of control, constant nausea, and significant gastrointestinal issues. I felt like I was dying. When I passed out at work I went to the closest walk-in clinic. The on-call doctor changed the course of my life by ordering an MRA of my abdomen and pelvis, and finally, I had a correct diagnosis of MALS! I had successful open surgery with Dr. Kenneth Cherry at UVA and then four years later, after my artery recompressed due to scar tissue and a weakened artery, I had my second open surgery with the same surgeon. He and his team performed the world’s first omentum fat wrap around the celiac artery. Three years after that, I recompressed again, and this time my surgeon contacted Dr. Ziv Haskal, an Interventional Radiologist at UVA who placed two stents from my abdominal aorta into the celiac artery and from the celiac artery into the splenic artery. My journey has been a particularly long one, but I am grateful to have a medical team that will always work to find the right solutions for me. I’ve spent my career as a clinical social worker advocating and helping others. I’m excited to be a part of this organization to help advocate for MALS awareness, diagnostic protocols, and appropriate treatment options for fellow MALS patients.  

I’ve dedicated my entire professional life to nonprofit fundraising, always choosing organizations in the realm of education. I’ve been fortunate to care deeply about every nonprofit I’ve worked for—from higher to elementary education, civic to multicultural education, and braille literacy to healthcare education—at organizations as varied as Boston University, National Braille Press, and The Schwartz Center for Compassionate Healthcare at Massachusetts General Hospital. My MALS journey differs from my other Board colleagues because my symptoms came on without warning when I was in my late 40s, although I had experienced unexplained lightheadedness for a year prior. I remember the day when I had the first of what I would now call a MALS episode. Two weeks later I was taken to the ER from work for what we thought was a heart attack. After struggling for nearly a year with undiagnosed symptoms, losing nearly 45 lbs from being unable to eat without debilitating pain, spiraling into anxiety attacks, and becoming at risk of injuring organs through lack of blood flow and nutrition, my doctor put me on medical leave. I cried tears of happiness when I finally had a diagnosis, and a clear path to surgery and healing. I consulted with two vascular surgeons in Boston and then found a MALS expert in another state. I chose laparoscopic surgery in January 2017 because of the surgeon’s holistic approach. During many months of healing and post-surgical challenges, such as costochondritis and SIBO, I found my peace through mentoring other MALS patients on the long road to diagnosis and wellness. During that time, I also advised small nonprofits on fundraising strategy, stewardship, project management, and team building. Now, I’m back to full-time employment, full-time enjoyment of life again, and am thrilled to continue to give back to the MALS community through this National MALS Foundation.

I’m the secretary here at the National MALS Foundation. I have dealt with various illnesses all my life but MALS has always been dear to my heart. It was my first official diagnosis after 16 years of symptoms that had been pushed off by multiple doctors. So when I was invited to be a founding board member of the National MALS Foundation I knew I had to be part of it. It took my aunt sending me an article about MALS for me to get diagnosed. I then had to travel to another state to get treated because at the time there were only 2 places in the country that treated pediatric MALS. I chose to go to the one that was doing a pediatric study to help my fellow patients. As I grew up I wanted to be involved with teaching more doctors about MALS. At 19 I found out I wasn't just special because of my MALS but I also had Superior Mesenteric Artery Syndrome (SMAS), Nutcracker Syndrome (NCS), Pelvic Congestion Syndrome (PCS) and May Thurner Syndrome (MTS). I ended up having another MALS surgery because scar tissue had wrapped around my celiac. I also had my SMAS & NCS treated at the same time with a Duodenojejunostomy (DJ) and Left Renal Vein Transposition at 20. I had symptom relief for a while but it all came back during 2020. All of my compressions had come back and I had a new one. I ended up getting an emergency renal vein stent placed while I was undergoing my angio to test for NCS again. Turns out I was allergic to almost all the components of the stent. With the pandemic in full swing getting my healthcare needs met was rough. I was getting worse and was completely bedridden for a year until I got scheduled for surgery in June of 2021. I had my MALS readdressed because of scar tissue once again, Strong's procedure done for SMAS, Left Kidney Auto-transplant for NCS and my entire Inferior Vena Cava was reconstructed. I have a connective tissue disorder called EDS that has likely contributed to my body recompressing. I want to work to improve the diagnostic process for MALS. I don’t want someone else to feel as though they are being ignored by their doctors purely because they are a child who has something rare.

My name is Kari, and like so many others, I had struggled with abdominal symptoms for decades never understanding the cause. I was finally diagnosed with MALS in 2007, when it was discovered through a catheter angiogram that I also have fibromuscular dysplasia. In August 2009, I finally broke down and pursued surgery, undergoing a celiac artery bypass and bovine patch angioplasty to my splenic/hepatic artery. The open surgery was a success, and I remained symptom-free for about three years. The pain and weight loss returned, and in 2015 my medical team decided that exploratory surgery was necessary and revision of my bypass was done. Again, the pain and symptoms went away, and have recently returned once again. I currently am working on non-surgical means of managing my symptoms. MALS is a chronic medical condition that affects so many aspects of our bodies and requires a long-term approach. In that same spirit, I have been pursuing my Bachelor of Science degree in Nursing, which motivates me even during long days, and reminds me that during chronic pain we can persevere. Professionally, I have worked as a Registered Nurse in both Pediatric and Adult Emergency Room environments. Prior to working in an emergency room setting, was in a supervisory position in a multi-specialty clinic. I currently volunteer as a mentor at Mayo Clinic Connect, an online patient-support community, and have volunteered with several patient-centered non-profits. I am honored to be part of the National MALS Foundation.