My name is Rafael Arevalo, and I was diagnosed with VHL back in 2009. It is on my moms side of the family.
It all started with my eyes, I woke up one day and my vision was a little blurry. After some testing it was discovered that I had some really tiny tumours or cysts in my retina, I can’t remember very well which one was it. I had perfect vision back then, until 2013. At this point I had the rest of my body checked and there was nothing else.
In 2013 I had to get lazer in one of my eyes, and cryotherapy in the other because of the VHL. The scar tissue from both procedures pulled the retina in both eyes and I had to go through a total of 8 surgeries, 4 in each eye in a period of 2 years. Because of this I became visually impaired. From 2013 to 2015 dealing with the surgeries and the recovery was very tough, physically and mentally. With the support of my family and listening to the right podcasts and audiobooks, I picked up myself, and decided to grow more as a person. I became certified as a personal trainer & started training again in Crossfit. Since then I have competed several times at the worldwide Adaptive Crossfit Games. I have completed a full distance Ironman triathlon, two ultra marathons with the first one covering a distance of 44 miles in 12 hours and the second one covering 30 miles in about 9 hours.
I’m currently finishing my degree in Psychology at Florida International University. Back in late 2024, I started taking welireg (belzutifan), because of a neuroendocrine tumor in my pancreas. The first couple of months were very tough with the brain fog, fatigue and just feeling out of breath. It was very challenging as an athlete and at school. I continued training and studying and my body has adapted very well. With the right people around you, exercise, meditation, a well balanced nutrition and the right mindset we can accomplish a lot. Now I am training for a 100 mile ultra marathon in December.
