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How my diagnosis changed my life
How has VHL changed your life? Share your story with other community members, and offer your support and advice here.
im worried
- By simo · New reply 1:30 pm
- 6 replies
- Hello, Please is it possible for someone to give me some informations about what is happening with me?So how i wrote before many days ago,Im 30 years old and I have VHL.First surgey in septeember 2005 ...
Adreanal Insufficiency No More
- By VHLDNA · New reply November 15, 2009
- 19 replies
- I had my bilateral adrenalectomy in 1986 and have been on hydrocortisone ever since. My current endocrinologist who I have been seeing for about one year has been concerned with the low dose I take. He ...
enucleation and social security
- By joy54 · New reply August 13, 2009
- 4 replies
- Hello, I have been diagonsed with ocular melanoma and have made the decision for enucdleation when the time come. (Probably real soon). I'm visiting the University of Ann Arbor for this condition. Has ...
Questions about your VHL Diagnosis
- By maccabbe · New reply February 22, 2009
- 3 replies
- Hello, I am a student of Newark Academy, a high school in NJ. I do not have VHL but would like to learn about it and how it has affected you and your family. I have a few questions I would appreciate ...
Oprah's Big Give
- By chewbacca1965 · Posted June 22, 2008
- 0 replies
- This is for my brother that was given a chance to drive again thanks to Oprah's Big Give and our local ABC station, that was given $20,000, to make dreams come true for some deserving people in our area ...
Recovery time after surgery?
- By heavenlykaelee · New reply June 22, 2008
- 6 replies
- I would like to hear about peoples experiences with this. I was diagnosed with VHL last February with numerous tumors on my kidneys. My father had VHL and passed away in 98' after having his kidneys removed ...
Fundraising for VHL?
- By Hi_its_suellen · New reply June 6, 2008
- 3 replies
- Hi Everyone, I've been working with a group called Team in Training who raises money and awareness for The Leukemia & Lymphoma Society...this is their 20th anniversary and they've raised almost $1 Billion ...
VHL journey
- By Rashi · New reply May 27, 2008
- 1 reply
- I'm a medical doctor and was diagnosed with VHL in 1994 when I suffered and was then operated for a cerebellar tumor. "A doctor becoming a patient" i.e being on the other side of the table had great impact ...
What does my future hold?
- By SimonG · New reply May 7, 2008
- 8 replies
- Hello all! My name is Simon and Iive in Somerset. Have just read a post from Spin and would like to say how sorry i was to read bout your partner. Im 38 and was just been diagnosed with VHL after having ...
Genetic Discrimiation?
- By joyceg98 · Posted March 5, 2008
- 0 replies
- Are you experiencing what you believe to be discrimination based on your genetic condition? Good Morning America wants to showcase the problem of genetic discrimination. They need an active case, and ...
New York Times article - ask them to retract
- By joyceg98 · New reply December 16, 2007
- 3 replies
- There's a newly published story in the New York Times about feuding that perpetuates the misinformation in last spring's AP article. Here is the message I sent to the author of the article. If you would ...
Please help. Does anyone go through this?
- By Deededell · New reply October 17, 2007
- 2 replies
- Since my dx of VHL in 2006, I have had hospital admission after admission. It starts out with me vomiting (who knows why that just starts up) after 8-10 hours of being sick I turn bright red and my heart ...
And now for a little VHL humor
- By Deededell · New reply September 12, 2007
- 9 replies
- You know Jeff Foxworthy has made millions off of "You might be a redneck if..." Since I was raised in Louisiana and dont have the priviledge of living in the south anymore I have come to so love those ...
How Do you Deal with VHL? - from Amanda
- By joyceg98 · New reply July 20, 2007
- 6 replies
- i was wondering if anyone would be interested in doing an interview for my senior reaserch project i have decided to do it on VHL and i don't know much about it . If you could send me information on how ...
VHL Awareness
- By Beverly2 · New reply July 2, 2007
- 2 replies
- As I've said a couple times here, we're having a pancake breakfast fundraiser here in Tampa in August. Along with fundraising, I would also like our efforts to be put toward VHL awareness. I thought that ...
diagnosed with vhl
- By sky_feather · New reply April 9, 2007
- 1 reply
- I will begin to say that I was diagnosed with vhl in 1991. I had to have surgery on one of my eyes. I had to go to a neurologist for all types of testing. I have have just recently found out the seriuosness ...
Gerson Therapy
- By Tony · New reply March 21, 2007
- 1 reply
- My daughter has VHL and had 2nd operation in 2 months. My friend refer me to " Gerson Therapy " that they have clinic in Mexcico. Have you heard about this clinic? Do you think the clinic will help any ...
