vhl alliance

Dear VHL Alliance

by Maria D.

We would like to take this time to express our heartfelt appreciation for the work you do!

My 37-year-old husband Scott has VHL. He was diagnosed with it when he was 13 years old. Since then, he has experienced numerous and reoccurring health problems. Over the past 24 months, he has been hit with brain, pancreas, spinal cord, and kidney tumors, some of which were cancerous. He has had a number of surgeries and had consultations with doctors at multiple hospitals.

After each medical appointment, our hope faded. Why was there such a rapid onset of tumors attacking Scott’s organs? Why did the medical team feel that there was nothing to be done? And where could we find help? We needed a second opinion.

It was then that we reached out to you, the VHL Alliance. The staff was filled with much compassion and a will to help in any way that they could. You (VHLA) helped us get the process started to have him seen by a top von Hippel-Lindau neurologist in the United States.

After my first conversation with the VHL Alliance, you used your network to contact three top neurosurgeons specializing in VHL. We had spent months feeling like we were spinning our wheels, but within the next few days we heard back from these neurosurgeons, each suggesting that there may still be treatments that could work for Scott. After much effort to convince the insurance company, Scott has received insurance approval to be seen at a Clinical Care Center.

My husband and I are feeling very hopeful that we will be able to receive good news and find the help we are seeking for him. The VHL Alliance was able to accomplish things that we would not have been able to do in months or even years. The staff were exceptional in all they did for us. Our “Thank You” is filled with much emotion and gratitude.