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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.
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 ...
Open line tonight!
- By joyceg98 · New reply February 23, 2009
- 2 replies
- We're on the phone right now -- join us at 408-792-6300, meeting ID 686-342-664, attendee ID 3# Best, Joyce Graff and Fran Mott ...
Help!!
- By Deededell · New reply January 1, 2009
- 5 replies
- I feel so alone and am hoping that their is someone out there that can help me feel better. I got the next slap in the face this week when my blood sugars went above 350. Now I have type 2 diabeties ...
Merry Christmas
- By diaryofageneticdefec · Posted December 22, 2008
- 0 replies
- Wishing everyone affected by VHL a Merry Christmas and a positive New Year. Lets hope that there is a major breakthrough in 2009. I know we hope for it all the time, because hope is all some of us have ...
Going to NIH
- By donnab · New reply December 15, 2008
- 23 replies
- I'll be at NIH Sept 21-24. I am doing scans, bloodwork and eye clinic all day on the 22nd. I have pretty much the whole day of the 23rd open and will be at OP 3 clinic on the 24th. I thought that if anyone ...
Webinars
- By gale · New reply December 9, 2008
- 12 replies
- The VHF Family Alliance is now active with Webinars. You will need your telephone and an Internet connection to participate. To register, go to http://vhl.org/support/webinar.php. If you have already ...
Webinars info has me even more confused and frustrated.
- By minimammax4 · New reply December 5, 2008
- 12 replies
- I'm not sure I'm posting this in the right spot, but I'm here basically to vent tonight anyway. So anyone that reads this, is one person that I hope can understand. I have been dealing with vhl for the ...
This is relentless.....
- By Myway · New reply December 3, 2008
- 14 replies
- I have been posting about SRS for spinal tumours recently, and my son after having a tumour removed from his spine was about to start a 6 week course of radiotherapy to treat a larger tumour that is embedded ...
Tribute
- By gale · New reply November 23, 2008
- 3 replies
- Did everyone see the tribute we did for Joyce Graff at the Orlando conference? It was the 15th anniversary of the VHL Family Alliance. We have come a long way. Between you and me, Joyce was choked up ...
Florida
- By gale · New reply November 22, 2008
- 2 replies
- Hi, My name is Gale Lugo, I live in Maitland Fl, and I am the contact person in Florida for the VHL Family Alliance. If I can be of some assistance to all you Florida folks, please let me know. Maybe ...
Anyone with a child with Di Georege/VCFS
- By 22q11mommy · Posted November 11, 2008
- 0 replies
- Hello I joined tonight to see if anyone else knows or has kiddos with this syndrome. My daughter is three and would love to find someothers our there who might can tell me more info or what there child ...
Guidance/Help on getting brother to seek medical treatment
- By Tye · New reply November 7, 2008
- 5 replies
- I am looking for help/guidance on getting my brother (41 yrs old) to see his doctor for help. We have been VHL patients all of our lives (grew up knowing about VHL); have an excellent team of experienced ...
