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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!
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Pheochromocytoma or Paraganglioma?
- By joyceg98 · Posted November 17, 2009
- Journal · 0 replies
- Oxford Outcomes has asked us to post this notice. Oxford Outcomes is conducting a qualitative research study involving interviews with pheo/para patients in order to evaluate the clarity, relevance, and ...
Need information
- By lety · Posted November 17, 2009
- Journal · 4 replies
- Hi My name is Letty I was diagnosed with VHL in 2002. I have been doing MRI of my head on a yearly basis because both my dad and sister have VHL and have had tumors in the head removed. I have recently ...
VHL Warriors Please!
- By TinaDiane · Posted November 14, 2009
- Discussion in Finding emotional support · 1 reply
- I know this may be a sensitive subject, but I am going forth anyway. This website is for support with the disease VHL. Please, if you are struggling with a disease that is NOT VHL, please please find ...
FINALLY!
- By beccaloo · Posted November 14, 2009
- Discussion in Financial and insurance issues · 0 replies
- I finally had my day in court...and I WON!! The whole thing started back in Jan.2001, and it's FINALLY OVER and we can move on! I applied for soc.sec.dis. in 2003 and after 2 denials, 2 appeals and 6 ...
Unnecessary surgery- what can we do?
- By Heather31200 · Posted November 14, 2009
- Discussion in Health management issues · 6 replies
- We just found out the other day that the spinal cord surgery that my husband had this May was unnecessary. We went to a specialist in Boston for a second opinion. The Neurosurgeon stated that my husband's ...
vhl
- By ireland22 · Posted November 6, 2009
- 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 · Posted November 6, 2009
- Discussion in Getting a diagnosis · 9 replies
- 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 ...
14 YRS SINCE MY BROTHER PASSED AWAY...
- By sonia40 · Posted November 3, 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 · Posted November 3, 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 ...
Just getting started..
- By Nannysgirl28 · Posted November 2, 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 ...
after virtrectomy surgery
- By pupa · Posted November 1, 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 ...
GOVERMENT RUN HEALTHCARE
- By Rick · Posted October 31, 2009
- Discussion in Financial and insurance issues · 19 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 ...
Update with a question....regarding central sleep apnea?
- By Myway · Posted October 30, 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 ...
Off we go again!!
- By BriannaB · Posted October 29, 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 ...
Inspire members featured
- By Brian · Posted October 28, 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 ...
Has anyone had this done?
- By RubySue315 · Posted October 27, 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 ...
RENAL ANGIOLIPOMA ANYONE???....
- By sonia40 · Posted October 26, 2009
- Journal · 12 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 ...
A CYST ON MY OVARY....
- By sonia40 · Posted October 24, 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 ...
HOPE ANYONE CAN HELP ME...
- By sonia40 · Posted October 23, 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 ...
Positive for VHL
- By BriannaB · Posted October 22, 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 ...
