Marisa A.'s Story
My name is Marisa, I’m 25 years old and from the United States. I was diagnosed with SMAS, MALS, Nutcracker Syndrome, Pelvic Congestion, and May-Thurner Syndromes in July of 2025 after struggling with undiagnosed health issues my entire life. I am also diagnosed with hEDS, POTS, Gastroparesis, occipital neuralgia, ME/CFS and a hereditary nerve disease called HNPP.
My health issues first began as a baby with extreme colic and reflux, then into childhood as constant “tummy aches” and complaints around my ability to eat. Doctors quickly shrugged it off as me being a picky kid who probably just didn’t want to go to school.
Around age 18 my health and weight began to drastically decline and I became incredibly ill. No doctors could figure out what was wrong with me and after slews of test I was sent home by my cardiologist being told it was “just stress and to try yoga”. My weight dropped very critically and I lost my hair during this time but very slowly managed to regain some of the weight, but never got back to my baseline.
At the start of this year I continued experiencing what I now know is the classic MALS/SMAS/EDS symptom combo and my weight dropped so quickly I found myself in and out of ERs at 75lbs at 5’2 begging anyone to find what was wrong with me. It was here that nutcracker syndrome was first discovered.
Since then, I’ve been in and out patient with countless appointments with various specialists and on January 12th I had my first surgery, the Alvear-Fowlkes Procedure and MALS release with Dr. Fowlkes. Since my SMAS & MALS surgery, I’ve unfortunately not received any relief of symptoms and am following up again with Dr Fowlkes to discuss a variety of further surgical procedures such as colectomy, ileostomy, pyloroplasty, gastric pacemaker or other surgery to fix my major motility issues which we believe are the cause of my continued symptoms and 100% reliance on TPN still.
Dr. Fowlkes has and continues to be amazing to work with, and so has his follow up when my symptoms didn’t resolve or got worse after leaving the hospital. He and his office have been there and responsive every step of the way. After my next surgery with Dr. Fowlkes, I will be having a renal autotransplant and then further surgical intervention for PCS and May Thurners.
After surgery I plan on continuing my pre-medical studies and transitioning to medical school, specializing in family medicine in attempt to create a better foundation of medicine for medically complex patients such as those with EDS and vascular compressions.
