Ysa is featured for her participation in targeted therapies that can improve quality of life and one day may lead to a cure.
 
Excerpt and link below...

More than a year ago, Ysa Engel was close to needing brain surgery. Ysa, 18, has a rare genetic disorder called von Hippel-Lindau (VHL) disease, which causes tumors, both benign and cancerous, and cysts to grow in multiple parts of the body. In Ysa’s case, a brain stem tumor — a benign hemangioblastoma — was beginning to cause vomiting and impact her swallowing and some sensory functions. Although surgical removal was a potential treatment, the area of the tumor was risky.

A new targeted therapeutic, belzutifan, had recently been approved for the treatment of VHL-associated tumors in adults ages 18 and older, and Ysa’s doctor, Debra Friedman, MD, MS, was able to get approval to treat her with the medication.

Within the first two months of belzutifan therapy, her brain stem tumor stabilized and even shrunk a bit.

“Then the tumor stayed stable for a year, which was great because it wasn’t impacting me anymore,” Ysa says. A recent scan suggested that the tumor may be growing slowly again, but Ysa is confident she can face surgery if it’s in her future

Exciting News!  Ysa worked with our Gilmer County Commissioner to declare February 28th Rare Disease Day for our county.  Check her out on the front page!