New discussions
- 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 · Posted November 21, 2008
- 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 gale · Posted November 17, 2008
- 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 Beverly2 · Posted November 15, 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 andypandy110 · Posted November 12, 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 · Posted November 12, 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 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 AEckerman · Posted November 10, 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 batley · Posted November 9, 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 roxielf56 · Posted November 7, 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 · Posted November 7, 2008
- In Getting a diagnosis · 5 replies
- After an MRI revealed a tumor on my L5 (spinal cord) I immediately had it removed which was about a month ago. My surgeon was convinced that by the looks of the tumor that it was cancer but said we had ...
- By KateInUK · Posted November 6, 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 Tye · Posted November 5, 2008
- In Finding emotional support · 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 ...
- By TinaDiane · Posted November 4, 2008
- In Getting a diagnosis · 11 replies
- I have just learned I have "strange things" on my lungs. The radiologist said they looked like hemangiomas but this has not been reported in VHL. I have Type 2b. Has anyone else every had any lung problems ...
- By dizzybee · Posted October 31, 2008
- In Getting a diagnosis · 4 replies
- Hello all, new to this site. I am a 45 yo white female, my mother was almost 35 when I was born and she smoked throughout her pregnancy. My brother had mumps and german measles, which my mother exposed ...
- By judy_mx · Posted October 30, 2008
- In Health management issues · 5 replies
- My 12 yr old son has been diagnosed with tumours on the C3 and T11. Has anyone had tumours in these positions and what was the treatment you received ...
- By Kberri310 · Posted October 29, 2008
- In Finding a doctor · 2 replies
- I'm hoping for some help. My 12 yr old has VHL with multipal spinal cord hemangioblastomas. I'm very confused and overwhelmed with researching for the best vascular neurosurgeon to guide us. We live in ...
- By Ariel · Posted October 23, 2008
- In Fundraising and raising awareness · 8 replies
- Hi everyone, To start off, let me introduce myself; I am a junior in college, and six years ago, my mother and sister were diagnosed with VHL. Since my family found out about VHL, I have committed myself ...
- By Trishd · Posted October 22, 2008
- In Health management issues · 5 replies
- Hello, i am wondering if any of you would have any advice on how i can speed up the process of getting my son moved to Rochester Minnesota, so he can be transferred to Mayo Clinic. He is currently in ...
