Laura E. Gilmore
Public Relations Coordinator
I’m the public relations coordinator 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 in 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.