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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.
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 ...
brain/spinal tumor symptoms?
- By amykate · New reply October 25, 2008
- 21 replies
- I was diagnosed with VHL last October after discovering that I had a rather large endolymphatic sac tumor in my left ear. I had that removed in January. I currently have a tumor in my cerebellum and a ...
Scared of kidney cancer
- By FridayThe13th · New reply September 19, 2008
- 10 replies
- Hi everyone I'm new to the board.Really don't know what to say right now.Some of you have probably been where I am at the moment.Last October I had a tumor removed from the right side of my spinal cord ...
Recipes
- By gale · New reply August 29, 2008
- 2 replies
- I tried this recipe last night, which we really enjoyed. I got it from cooks.com but I modified it a little. 1 lb yellow squash 1/4 c chopped onion 1/4 c chopped green pepper 1 c herb stuffing mix 2 tbsp ...
Need a friend
- By AlexAnderson · New reply August 22, 2008
- 2 replies
- I need to find a friend who I'm like. Someone who is picked on in school, has a disease, ya'know, the works ...
VHLhope
- By inferni · Posted July 27, 2008
- 0 replies
- Hi all, A new site for those in the UK affected by VHL has been created. VHLhope.co.uk This site has been created by those with VHL and offer support to those in the UK only. No medical advice is given ...
Does certain sounds hurt your head and spine
- By birdmom · New reply July 15, 2008
- 8 replies
- Hi I am a 52 year old female I have a clinical diganosis of vhl. This is going to sound crazy ,does anyone else experience sounds that hurt. I have for about 1 year been having problems with certain sounds ...
wow
- By flwrgurl · Posted July 15, 2008
- 0 replies
- first i would just like to say wow! it is really awesome that i found a website that you can discuss issues or anything really on your mind about conditions that greatly impact your life. i would just ...
Orlando VHL Conference/Meeting
- By gale · New reply June 21, 2008
- 1 reply
- I hope this note finds everyone doing their best. Knowing this can be different for different people, we created a meeting with you in mind. Please come join us on the 15th Anniversary that the VHL Family ...
tellin someone new you have vhl
- By batley · New reply June 7, 2008
- 10 replies
- hi everyone ok ive come up with a problem , ive got a date , wow a date , anyway, im worried as far as this man knows im heathy and fit im really sceared after what my ex hubby did or should i say took ...
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