Active discussions
- By gale · New reply 9:11 am
- 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
- 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
- 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 batley · New reply November 20, 2008
- 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
- 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 Beverly2 · New reply November 19, 2008
- 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
- 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 AEckerman · New reply November 13, 2008
- 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
- 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
- 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
- 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
- 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
- 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 ...
- By Raeanne · New reply November 11, 2008
- In Health management issues · 9 replies
- Does anybody want to share their experience with cyberknife surgery for brain tumors? If you've had this surgery, can you please tell us what worked for you and what may not have worked for you. Thanks ...
- By joyceg98 · New reply November 11, 2008
- In Health management issues · 15 replies
- This week's radio show is about Appreciating Kidneys. In it we talk about how to take care of your kidneys, and what to do if they no longer work. I talk about my son's experience on dialysis, and about ...
- By diane1805 · New reply November 11, 2008
- In Medical treatments that worked for me · 9 replies
- I just want to share my experience with you all. It started three years ago when i read an article on the internet about cannibas , stating that it was responsible for shrinking tumors in , it particulary ...
- By NewtoVHL · New reply November 11, 2008
- In Getting a diagnosis · 26 replies
- This past week has been a whirlwind. Tuesday went in to the ER for some severe abdominal cramping and fatigue. An Abdominal CT scan detected a mass on each kidney and a mass on the liver and some lesions ...
- By batley · New reply November 10, 2008
- In Parenting issues · 12 replies
- ive read some things on here about people bein tested for vhl and it commin back no vhl but they do have it , im confused , i have vhl and my daughter my son come back with a no but do i really beleave ...
- By Sty · New reply November 10, 2008
- In Medical treatments that worked for me · 14 replies
- I have two tumors that have grown significantly over the last year. That's the first time they've changed in size in over 10 years. I don't know which route to take and would like some insight from as ...
