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- By Brian · New reply 12:44 pm
- Journal · 24 replies
- I am pleased to announce that we have updated Inspire to support video. You can now share a video of yourself, videos that you find inspirational or informative, and more. I've included one of myself ...
- By gale · New reply 9:11 am
- Discussion in Finding emotional support · 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 ...
- By Eug · Posted yesterday at 2:40 pm
- Discussion in Financial and insurance issues · 0 replies
- Hi, Just wondering if anyone knows whether Vhl is now classified as a disability, whereby annual MRIs/CTs can be considered part of essential routine health checks. For people with diabetes, the medication ...
- By gale · New reply yesterday at 1:41 pm
- Discussion in Finding emotional support · 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 ...
- By dizzybee · New reply November 21, 2008
- Journal · 10 replies
- I finally got an appt with a geneticist on 1/13. This is just a meeting to see if I need genetic testing, but at least it's a start ...
- By batley · New reply November 20, 2008
- Discussion in Getting a diagnosis · 5 replies
- hi all has anyone in england had key hole op to take a kidney tumor out , or anyone any where really , my brother has a 3,9cm tumor on kidney and was told possible key hole but i cant see it myself ...
- By KateInUK · New reply November 20, 2008
- Discussion in Getting a diagnosis · 15 replies
- I had a HAB on the cerebellum 12 years ago and then told it could be VHL and should be screened. I was screened for a while. The DNA test has twice come out in the "don't know" and so have the tests on ...
- By dizzybee · New reply November 19, 2008
- Journal · 6 replies
- Has anyone had a PET & CT with contrast and radioactive tracer and felt sick afterwards? I had one done on 10/24 and every since then I've been very weak, nauseous and just don't feel well. I thought ...
- By Beverly2 · New reply November 19, 2008
- Discussion in Health management issues · 11 replies
- I've seen many people referring to type 2B in the discussions lately, and I was just wondering how you know that you have type 2B. When we were given Steven's genetics results, no mention was made of ...
- By Myway · New reply November 19, 2008
- Discussion in Finding emotional support · 12 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 ...
- By Brian · New reply November 16, 2008
- Journal · 124 replies
- When we started this community, each of us faced important health issues in our lives. Some of us have family members with medical conditions. Many of us have medical conditions of our own. All of us ...
- By Rick · New reply November 14, 2008
- Journal · 5 replies
- Just wantedd to share this. I found two hospitals in NY that have performed SRS on spinal tumors. Westchester Medical Center, Valhalla, NY and Mount Sinai Medical Center, NY,NY. I do not beleive they ...
- By dizzybee · New reply November 14, 2008
- Journal · 8 replies
- to all of you with your words of encouragement, advice, ideas, etc. Thanks to Gail at VHL for calling people for me. Hopefully, (fingers crossed) I will going to a genetics counselor at Shands in Gainesville ...
- By AEckerman · New reply November 13, 2008
- Discussion in Kids and teens · 9 replies
- Recent mris show several hemangioblastomas located in the nerve roots of my 16 year old. I understand that this is a rare location for most VHL spinal tumors. I was told to have her rescanned in 6 -9 ...
- By gale · New reply November 13, 2008
- Discussion in Health management issues · 9 replies
- I have been experiencing air hunger throughout the day, where I just pant for air for a few seconds. It doesn’t matter what I’m doing, even when I do nothing, I can’t breath. It only lasts a few seconds ...
- By roxielf56 · New reply November 13, 2008
- Discussion in Getting a diagnosis · 5 replies
- I have recently been looking to rule out VHL in regard to my diagnosis. I have a hemangioblastoma tumors (retnal) that has been treated with cryotherapy recently. But the tumors found on my spine by my ...
- By andypandy110 · New reply November 13, 2008
- Discussion in Getting a diagnosis · 2 replies
- A month ago I had a hemangioblastoma removed from my spinal cord (L5). I've been told that because the tumor is so rear that it was sent to three different pathologist before they had a clear diagnosis ...
- By gale · New reply November 13, 2008
- Discussion in Finding emotional support · 11 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 ...
- By 22q11mommy · Posted November 11, 2008
- Discussion in Finding emotional support · 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 ...
