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- By ireland22 · New reply 8:49 am
- Discussion in Getting a diagnosis · 1 reply
- Hi all, well i have been toald that i have a tumor in my inner ear ( ELST) but the tumor is leaning up on my facial nerve and the right side of my face has drooped a little , what id like to find out ...
Television exposure
- By eramsteven · New reply yesterday at 4:47 pm
- Discussion in Getting a diagnosis · 1 reply
- Just to let you know that VHL was mentioned on the ABC show, Private Practice last night. It had to do with preimplantation genetic testing of embryos with dwarfism. The doctor wouldn't implant becuase ...
RENAL ANGIOLIPOMA ANYONE???....
- By sonia40 · New reply November 5, 2009
- Journal · 10 replies
- Hello everyone..... as you all know me for those people who are following my posts....i have been told that i have a 5cm Renal angiolipoma on my right kidney....(have not had a biopsy as yet)...i also ...
Just getting started..
- By Nannysgirl28 · New reply November 5, 2009
- Journal · 1 reply
- We are now in what you would call the "down period" of my grandmother's chemo treatments. She is actually taking them very well. Getting around on her own and eating well. We begin 3 more chemo treatments ...
Off we go again!!
- By BriannaB · New reply November 5, 2009
- Journal · 3 replies
- We just got back from my husbands appointment with the neurosurgeon, and yes he is going to have another brain surgery sometime within the next 6 months... he wants it to get a little bigger. Anyways ...
GOVERMENT RUN HEALTHCARE
- By Rick · New reply November 5, 2009
- Discussion in Financial and insurance issues · 18 replies
- I was diagnosed with VHL in 1980 and have had a total of 23 tumors either removed with conventional surgery or otherwise taken care of (radiosurgery). I am wondering if anyone else out there is concerned ...
14 YRS SINCE MY BROTHER PASSED AWAY...
- By sonia40 · New reply November 4, 2009
- Journal · 13 replies
- Hello all the wonderful ladies and gents on this wonderful site.... Today is a sad day for me....today is my brothers anniversary....he passed away exactly 14yrs ago of pacreatic cancer..he was only 28yrs ...
no new nasties
- By diaryofageneticdefec · New reply November 4, 2009
- Journal · 3 replies
- Just wanted to share the good news that my annual review said, that i can come back in a year. whoo hoo ...
Inspire members featured
- By Brian · New reply November 4, 2009
- Journal · 29 replies
- Today Massachusetts General Hospital's Proto Magazine published a wonderful profile of nine Inspire members. Each of these stories underscores what we all know to be true -- that Inspire is a special ...
Avastin and Lucentis for retinal angiomas?
- By hope520 · New reply November 3, 2009
- Discussion in Health management issues · 14 replies
- I am a 33 year old female diagnosed with VHL in 1998. I have been treated for retinal angiomas since 1998. I have had cryotherapy, retinal detachment and ongoing laser surgeries. I would like to find ...
after virtrectomy surgery
- By pupa · New reply November 2, 2009
- Discussion in Medical treatments that worked for me · 2 replies
- 6 months after virtrectomy and all was going well, bingo, I started to experience floaters, the drs say that it could be membrane peelng and they will follow up but the floaters are how last year the ...
Waiting
- By rocksea · New reply November 2, 2009
- Discussion in Finding emotional support · 3 replies
- My mother was diagnoised with 2 brain tumors in June. She lost an eye to VHL in 1963 and is blind in the remaing eye. She has also lost one kidney and part of another to VHL. She is having major balancing ...
Update with a question....regarding central sleep apnea?
- By Myway · New reply November 1, 2009
- Discussion in Finding emotional support · 3 replies
- Just a quick update - first thank you for all your support and prayers, our son is making slow but steady progress. He is still in intensive care and is now breathing on his own during the day, but it ...
A CYST ON MY OVARY....
- By sonia40 · New reply November 1, 2009
- Journal · 13 replies
- Hello everybody.... for those wonderful people who are keeping up with my posts...(LOL)...im just wondering if anyone can claryify this confusing situation....i was diagnosed with CIN1/HPV...so back in ...
Has anyone had this done?
- By RubySue315 · New reply October 29, 2009
- Discussion in Getting a diagnosis · 2 replies
- My daughter found out she had VHL in 2004.She had part of her pancreas rmoved in Jan.2006. In Oct.2006 she had Brain surgery for a malignant tumor.Now the cancer has gone to her liver. They want to do ...
VHL and Livestrong
- By lifeandhope · New reply October 28, 2009
- Discussion in Fundraising and raising awareness · 5 replies
- Great news about Livestrong adding VHL to it's dropdown box of types of cancer!!! This is great exposure ...
HOPE ANYONE CAN HELP ME...
- By sonia40 · New reply October 26, 2009
- Journal · 8 replies
- Hello all once again as i mentioned before i am scheduled for my app in december..(re partial nephrectomy)....i just have a few symptoms that im dealing with and thought which better place to ask than ...
FINALLY GOT AN APP WITH A HOSPITAL....
- By sonia40 · New reply October 23, 2009
- Journal · 10 replies
- Hello all i am soooo excited i just had to let everyone know the wonderful news...today i received a letter from 1 of the hospitals that i was on the waiting list regarding my kidney tumor....i have an ...
Tumor growth in young children
- By BriannaB · New reply October 23, 2009
- Discussion in Parenting issues · 8 replies
- My husband has VHL and has had 4 Brain operations to remove them. We are awaiting test results on our two children. Because of it DNA testing it takes way longer then your standard blood test, so were ...
Positive for VHL
- By BriannaB · New reply October 23, 2009
- Journal · 2 replies
- Right now in my family we have 5 kids that had to be tested for the VHL disease. So far 3 have come back. 2 are free and clear, but today we found out my neice is potitive for VHL. We are still awaiting ...
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The VHL Family Alliance Support Community connects patients, families, friends and caregivers for support and inspiration. The VHL Family Alliance Support Community is sponsored by the VHL Family Alliance in partnership with Inspire.