My name is Robin, and I’m the President of 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, pain in my abdomen, 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 from Austin Peay State University in Tennessee and my Masters of Social Work from Southern Illinois University - Carbondale in Illinois. After college, I 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 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 and exercising, chest pressure like an elephant was sitting on me, fatigue, blood pressure that was out of control, constant nausea, hives that were unresponsive to treatment, 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 in Virginia in 2010. Four years later, my symptoms returned. My artery had re-compressed due to scar tissue. 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. All symptoms resolved. Three years later, my symptoms returned. Once again, I needed intervention. This time, my surgeon contacted an Interventional Radiologist who ended up placing two stents. One was from the abdominal aorta into the celiac artery in 2017, and a second was from the celiac artery into the splenic artery in 2018. Symptoms resolved after each stent. In 2020, that same old feeling returned. The uncontrolled blood pressure, the nausea, hives, fatigue, etc., so  I returned to my doctor, where they used a cutting balloon to revascularize the artery. Symptoms resolved again until the Spring of 2023, when they started to return one by one. In December 2023, I had another procedure where they used a medicated balloon. I am happy to report all of my symptoms have resolved again.  

 

During my course of treatment, I also experienced several complications, including multiple DVT’s, an arterial clot, etc. 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 am currently the Supervisor of Mental Health for a school system for my “day job.” I am honored and excited to be a part of this organization to help advocate for MALS awareness, diagnostic protocols, and appropriate treatment options for fellow MALS patients.