vhl alliance

Maureen – My journey as a #VHLWarrior

My journey as a #VHLWarrior began when I was 4 years old. My mom took me to the eye doctor for what she thought was a lazy eye; it turned out to be something much different. This began many years of eye surgeries to remove hemangeoblastomas from eyes. Eventually, by age 17, I was left totally blind.

Though VHL was what I was told I probably had It wasn’t determined a definite until age 10 when I got my first brain tumor. I had a long recovery. I had to learn to walk again, but after a month in the hospital I had a full recovery.

By age 16 renal cell carcinoma started and after many kidney surgeries I finally received a kidney transplant from my brother when I was 26.

VHL caused me to have many more surgeries, but the most difficult was definitely my spinal cord surgery when I was 32. This was frightening for me and a very long recovery. I worked hard using yoga, healthy diet, and many forms of fitness to regain my strength and after 2 years I was able to regain my very active life style.

I am now 34 and have had a total of 33 surgeries. This disease has made me who I am. I feel strong, determined, and fortunate. I appreciate each day and enjoy my life.