More questions than answers.

While sitting at home, recovering from surgery, I keep wondering why no one has come up with a man made protein that persons with VHL can take. They know the gene that produces the tumor suppressing protein. Research has proven that in VHL patients that gene no longer produces the protein. If they can make insulin, why can't protein be recreated. The group of patients dealing with VHL, worldwide, is not a handful, less than ten. Anyone know the numbers for North America? Now include Europe, Asia, Africa, South America. Yet all I am reading and hearing about is dealing with the symptoms, most family doctors are not informed about VHL. In my neck of the woods, no one knows which specialists are working in the fields we need. The general public knows about Breast Cancer Awareness and other celebrity acknowledged
illnesses. Does VHL even have a VHL Awareness day, never mind a month. What big drug companies are fighting each to be the first to market a tumor suppressor? My two sons have looked to me for answers to their questions all their lives, they are carriers of the mutated gene, now in the face of their biggest battle to be fought I have no answers. I have been pro active all my life and I am so angry that I pass on a somewhat bleak future to my sons, grandchildren...so on down the line. Our voices,(all persons with VHL, their families, future generations), should be just as important to our politicians, drug companies, reasearchers as the loudest voice they listen to. The money all VHL patients have had to pay for prescriptions, tests, doctor visits, surgeries make a very strong financial VOICE. Wouldn't it be nice if we could free up OR's, doctor offices, testing facilities for others because there is a suppressor for VHL? It is known which gene causes VHL, the tumor suppressing protein is known because it is known when the gene no longer produces the protein. So why do we as people with VHL not have a brighter future? We have all lost family members, close or distant, in the 21 century the future should be brighter. Our future generations deserve better, we deserve better!