vhlfa
| Forum role | Member since | Last activity | Topics created | Replies created |
|---|---|---|---|---|
| Member | Jan 24, 2009 (17 years) |
- | 1 | 0 |
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Bio
Joyce Graff is the Executive Director of the VHL Family Alliance and the host of the Powerful Patient radio show and podcasting service.
In 1963 she married Frank Graff who had a mysterious rare condition called von Hippel-Lindau disease (VHL). Very little was known about this in 1963 -- most doctors knew nothing, and there was no information at all written for patients.
"We learned about VHL by bumping into walls," Joyce likes to say. Little by little, as new problems emerged, they were overwhelmed. They felt extremely isolated, and as if no one else could possibly understand what they were going through.
Frank died in 1977. In 1986, their son was diagnosed with VHL. At that point, Joyce embarked on her second voyage with VHL. But this time it was different. "With Frank, it was his body and his right to make decisions. Even though we usually discussed things, in the end it was his decision. But this time, I was the mother, and I was in charge."
Being in Boston, she went to the Harvard Medical School library and plowed through dusty old medical textbooks and journals to find out everything she could about VHL. "At one point, I sat back and said to myself, I'm doing what a doctor would have to do to find out about VHL. And the reality is that the doctors don't have the time to do this for one patient with one of the thousands of rare diseases."
She realized that she would need to take some responsibility for helping her doctors get up to speed in order for them to do their best job for her son.
Over the past nearly 30 years she has worked to form a working partnership with physicians and researchers and with other families to learn how best to manage one's health, even without any magical drugs or silver bullets to cure the disease.
"You can't fix it all. There are no guarantees. But we can certainly shift the odds."
Out of this committment she founded the VHL Family Alliance in 1993 with two other mothers. VHLFA is now in touch with more than 15,000 people with VHL in 103 countries.
Again, out of this same committment, she founded the Powerful Patient in 2007, to share with other people faced with complex medical conditions the strategies that she and other VHL families have learned over the years -- hope, wellness, and partnership strategies that can help with any of life's hurdles, and especially with any complex medical condition.
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