Basic Facts About VHL
Managing Your Health
Information for Health Care Professionals
Research
About the VHL Family Alliance
Press Room
Families, Friends, Physicians, & Researchers working together
to improve diagnosis, treatment, & quality of life for people affected by von Hippel-Lindau disease.

Resources

Hot Braille. At the HotBraille.com website, a small group of tech-oriented young men are doing good online. The service allows people to send letters, notes and other printed information to visually-impaired friends or family members who read Braille. You send e-mail and the HotBraille team converts it to Braille and mails it out, all for free. http://www.hotbraille.com

The Gift of Pain. I have been reading a book called "The Gift of Pain" by Dr. Paul Brand, who has worked with Leprosy patients in India. He also has worked with patients with RSD, a syndrome which causes a person to over-respond to trauma, by having a stiff and painful foot or hand. He has had some interesting observations on pain....He tells of a hospital in India where there was a shortage of nurses, so patients were asked to help each other. They all asked for less pain medicine..then when the staffing was worked out, the patients had nothing to do but to focus on themselves. They all asked for more pain med again!!!! Food for thought!!! I know that when I am in a lot of pain and I go to work and care for those who have similar pain, I forget about mine and focus on helping them. Good medicine is helping others. -- Deb H., Massachusetts

Capitol Hill. To see what’s happening in the U.S. Federal government, to find a senator or congressman, see http://www.fedbuzz.com You can file health discrimination complaints online, get information on Occupational Health and Safety (OSHA), posters, free literature, and access to all branches of the US Government.

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As printed in the VHL Family Forum 8:2, June 2000.  For permission to reprint, please contact VHL Family Alliance, editor@vhl.org.

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