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Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Finding emotional support
Anxiety? Depression? Fear? Discuss how your diagnosis has made you feel and offer or ask for support here.
VHL Warriors Please!
- By TinaDiane · New reply November 15, 2009
- 1 reply
- I know this may be a sensitive subject, but I am going forth anyway. This website is for support with the disease VHL. Please, if you are struggling with a disease that is NOT VHL, please please find ...
Waiting
- By rocksea · New reply November 9, 2009
- 5 replies
- My mother was diagnoised with 2 brain tumors in June. She lost an eye to VHL in 1963 and is blind in the remaing eye. She has also lost one kidney and part of another to VHL. She is having major balancing ...
I ask you once again for your prayers.
- By Myway · New reply November 8, 2009
- 8 replies
- I haven't written now for some 10 weeks....how do I know? Because that is the length of time our son has been in intensive care since his surgery on the 4th August. This time the surgery was to remove ...
Update with a question....regarding central sleep apnea?
- By Myway · New reply November 1, 2009
- 3 replies
- Just a quick update - first thank you for all your support and prayers, our son is making slow but steady progress. He is still in intensive care and is now breathing on his own during the day, but it ...
Stroke and VHL
- By Michele40 · New reply October 23, 2009
- 1 reply
- I have recently been diagnosed with VHL. I have had two surgeries on my spine this year to remove hemangioblastomas. I still have three left on the spine that are assymptomatic and won't be removed unless ...
Genetic myths
- By joyceg98 · New reply October 20, 2009
- 18 replies
- I'm curious -- what family lore was in your family about how VHL was inherited, or where it began? - only affects boys - only affects girls depending on who had VHL in the family. But other things, too ...
i want a baby
- By simo · New reply October 19, 2009
- 7 replies
- Hello, My name is Simona and Im 30 years old.Im married of 2 years ago and...me and my husband we want very much a baby.Is it possible to have a baby if I have VHL?I did a surgery in 2005 to my head,in ...
My VHL family
- By BriannaB · New reply October 12, 2009
- 9 replies
- My husband was diagnosed in 2000 when we found the first brain tumor. After many months in the hospital and 3 operations. We finally came home and were tumor free for about 9 years. This past Oct an MRI ...
Protocol on ZD6474
- By docswife · New reply October 8, 2009
- 3 replies
- I was just at NIH last week and was asked to be on a protocol for those who have renal cell tumors. Is there anyone on this protocol thats has been on it awhile and has had side effects and what they ...
When Tumors Grow
- By ballroomdancer · New reply September 13, 2009
- 14 replies
- For six years i have had a kidney tumor that has not grown at all and stayed very small. For this year's abdominal MRI, the kidney tumor grew fast and my surgeon is very concerned about the sporadic growth ...
My son is home!!! Now he faces surgery again.
- By Myway · New reply July 30, 2009
- 13 replies
- This is an update for those who have joined in with the short lived celebrations of my son coming home and to ask all of you once again for your prayers. All I really want to do is scream - my son was ...
living with vhl is difficult
- By teray · New reply July 1, 2009
- 3 replies
- looking to discuss ways of living with vhl disease ...
I've just found out...
- By Andreea_C · New reply June 20, 2009
- 14 replies
- I've just found out a couple of days ago that my mother in law is diagnosed with VHL syndrom. So i guess there is a posibility my husband has this disease too. I read that the chances are 50%. My mother ...
vhl in s.y.'s in brooklyn
- By pupa · Posted May 12, 2009
- 0 replies
- If you are familiar with vhl. Than you will be able to relate to the threatening feeling of despair. If you are s.y. I would like to talk with you. You know who you are So please respond, maybe we can ...
Ten Months out
- By plischeske · New reply April 27, 2009
- 14 replies
- On December 17th, 2007 I underwent surgery at UCSF in which they removed a pretty big hemangiomablastoma from my cerrabellum. Another Surgeon had tried to remove it back in 1994, but was worried about ...
Just wanted to share some good news!
- By Myway · New reply April 26, 2009
- 6 replies
- I always seem to ask for prayers, support and advice from this group, so just for once I would like to share a journey that has light shining through it. My son over the past eight months has had a spinal ...
Looking for others with VHL
- By chewy · New reply April 10, 2009
- 22 replies
- Hello, l have recently been diagnosised with VHL and l am looking for others who are going through the same issues with this disease. I am 46 years of age and l maybe applying for disability. lt is hard ...
Canadians
- By inapeoplehouse · New reply April 8, 2009
- 21 replies
- Hi there, I have posted before, but it has been some time. I would be really interested in connecting with fellow Canadians with VHL. I find many of our issues can often be different, due to the insurance ...
learning to walk again
- By raekel · New reply March 10, 2009
- 14 replies
- in august of 2006 i was treated with cyberknife for a nonsymtomatic brainstem tumor. it was predicted to go well because the tumor was considered small enough and there was no cyst. unfortunately things ...
Oprah's Big Give
- By wheelchairman36 · New reply February 24, 2009
- 6 replies
- I know lots won't know who I am because been a long time since posting. Oprah has gave 10,000 dollars to our local ABC affiliate to desperse among 4 organizations and the one has chosen me to recieve ...
