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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.
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Health management issues
With early diagnosis and better management, people with VHL are living longer and staying healthy longer than ever before. This is a good place to share what you have found helpful in your own life and family, and to ask for hints.
GREAT Sutent News
- By TJ7334 · New reply March 12, 2009
- 2 replies
- I was listening to CNBC this morning when they announced that the clinical trials regarding Sutent would suddenly be coming to an end. Why? Because they wanted to stop using the placebos in the trials ...
vhl pancreas tumor experience
- By kimbre · New reply February 18, 2009
- 4 replies
- I have a very small solid pancreas tumor-not a cyst (in the head of the pancreas) and wanted to hear from any of you about your experience with pancreas tumors. What was your doctor's advice? Did you ...
Spinal VHL Tumors and Cysts...Help Please
- By Blind_Kiwi · New reply February 18, 2009
- 4 replies
- Kia Ora everyone from New Zealand, I would like to tap into the vast knowledge base we have here and extract some information on Spinal VHL treatment options. I have problems in C2, 3, 4 and 5 with pressure ...
NDRI
- By gale · New reply February 5, 2009
- 12 replies
- They have extended the VHL tissue donation program for 6 months. If you file your DNA mutation with NDRI (tissue bank), the VHL Family Alliance will be able to mail you $100 for this very valuable donation ...
A new area - the kidneys - more to learn!
- By Myway · New reply February 4, 2009
- 7 replies
- Some of you already have supported us with your prayers through the last 12mths, as my son has undergone numerous resections and radiotherapy. To date all my son's tumours have been in the cerebellum ...
FDA Approves Human Trials with Stem Cells
- By Kristel · New reply January 29, 2009
- 1 reply
- A glimmer of hope for all of us. This specifically relates to spinal cord injuries but it means possible advancement in a lot more areas of our bodies. http://www.cnn.com/2009/HEALTH/01/23/ste m.cell/index.html ...
Latest VHL radio show
- By joyceg98 · New reply January 28, 2009
- 21 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 ...
I m always tired
- By semperfi16 · New reply January 25, 2009
- 4 replies
- im always tired my doc says its part of having VHL whats that all about? oh and this eye thing i guess its called an angioma of the eye whats that all about ...
i just found out i have VHL
- By semperfi16 · New reply January 24, 2009
- 6 replies
- IM A MARINE OF 12 YEARS SERVIVED WARS AND ALWAYS FELT BLESSED . I COME HOME FIND OUT I HAVE KIDNEY CANCER , THE KIDNEY REMOVED AND THEN THE BOMBSHELL MY DOC SAYS HEY YOU HAVE VHL GOOD LUCK ...
Cancer drugs
- By Beverly2 · New reply January 19, 2009
- 2 replies
- I noticed in the VHL ad that ran in the USA Today (in October, maybe?) that VHL research has led to the development of four cancer drugs. What are those drugs and what cancers are they typically used ...
Phakomatosis
- By Beverly2 · New reply January 16, 2009
- 9 replies
- I'm curious about VHL being grouped with NF and tuberous sclerosis as a disease of phakomatosis. I usually think of lesions on the skin as the reason that NF and tuberous sclerosis are grouped under phakomatosis ...
Pancreas tumor
- By kimbre · New reply January 14, 2009
- 26 replies
- I have a small pancreas tumor that is described as an "islet cell neoplasm in the uncinate process (the head of the pancreas)". Has anyone had one of these? If so, what were the symptoms you experienced ...
Ocular tumors
- By marie3 · New reply January 11, 2009
- 21 replies
- Hello Group, I'm sure you all know me by my eye issues. My very ill eye has been quiet for almost a year. Let me give you little refresher. I have an ocular tumor that was discovered about 7 years ago ...
Relocating to Maryland with VHL
- By cmitchhall · New reply December 28, 2008
- 1 reply
- Hi my name is mitch I have had active VHL for 21 years currently I live in Colorado but will be relocating to Maryland in early 2009. I previously was studied at NIH many years ago does anyone know of ...
Type of VHL
- By Beverly2 · New reply December 18, 2008
- 17 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 ...
VHL studies and cancer drugs
- By Beverly2 · Posted December 18, 2008
- 0 replies
- I recently saw (maybe in the USA Today VHL ad) that four cancer drugs have been developed from VHL studies. I'm assuming that two of these drugs are Sutent and Avastin. What are the other two drugs, and ...
breathing question
- By gale · New reply November 13, 2008
- 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 ...
Cyberknife brain surgery
- By Raeanne · New reply November 11, 2008
- 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 ...
desperately looking for advice for son in federal prison with tumors kidney
- By Trishd · New reply November 3, 2008
- 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 ...
kidney cancer and screening for mets
- By kimbre · New reply October 20, 2008
- 8 replies
- Hi, I have renal cell carcinoma and VHL. I understand the handbook says to get MRI's of the brain and spine every 2 years. However, with kidney cancer, is that needed more often- every year- to scan for ...
