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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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Journals
Wishing you a good outcome
- By MaryP · Posted October 11, 2009
- 8 replies
- Like many of you, I am a sandwich VHL patient. My mother had the disease, I have it, and my daughter also has VHL. After so many tumors, and so many surgeries, I wondered if in some way I was "allowing ...
Netherlands VHL meeting
- By joyceg98 · Posted October 11, 2009
- 2 replies
- I flew to Europe on Thursday night, arriving Friday morning in Brussels, where I was met by a friend of Chris Hendrickx, the chairperson for Belgium. I stayed with Chris and her husband near Antwerp for ...
....
- By Ieva · Posted October 9, 2009
- 0 replies
- I am recovering from breast reconstruction. Luckily enough done for relatively small sum of money. Most likely because surgeon convinced officials that he needs more patients to gain experience and be ...
After brain surgery
- By carilyn · Posted October 8, 2009
- 1 reply
- In late July this year, I went for a brain surgery. I had a hemangioblastomas and a nearly 5 cm cyst on the right side at the back of my head. The tumor was removed and the the cyst,containing pus, was ...
Urologist in Phoenix area
- By joyceg98 · Posted September 23, 2009
- 7 replies
- We have a member who is looking for a good urologist in the Phoenix, Arizona, area. Any suggestions? Thank you, Joyce ...
Men with kidney cancer - reviewers needed ASAP
- By joyceg98 · Posted September 23, 2009
- 0 replies
- This offer will be over shortly. This is a different kind of marketing company that is supposed to specialize in education. You can read about them on their website www.healthed.com They are looking for ...
Does she or doesn't she???
- By joyceg98 · Posted September 9, 2009
- 10 replies
- When people are told they may be "mosaic" for VHL or any other disease, what nagging questions are they left with? If you are in this situation, could you please share the unanswered questions you have ...
VHL Diagnosis
- By shevy-22 · Posted September 4, 2009
- 2 replies
- My 56 year old brother was diagnosed yesterday with VHL. He had a kidney removed in August and a mass was detected on his spinal cord in his neck. The MRI's ruled out any tumors on his brain. He has suffered ...
undiagnosed stomach problems?
- By joyceg98 · Posted September 3, 2009
- 2 replies
- Today's Powerful Patient interview is with Dr. Stephen Wangen, an expert in Irritable Bowel syndrome. He will talk with us about those non-descript abdominal symptoms that are so hard to diagnose, including ...
Life
- By MariaKaminski · Posted September 2, 2009
- 0 replies
- Not everything comes easy in life, somethings are a challenge but it can be well worth the effort if you fight for what you believe in ...
People with disabilities fighting cancer
- By joyceg98 · Posted September 1, 2009
- 0 replies
- We have been asked to post the following information. This study is seeking participants. "Any adult cancer survivor who had a functional limitation that existed prior to their cancer diagnosis and has ...
Spinal tumors
- By LSJT · Posted September 1, 2009
- 0 replies
- Hello everyone. I have just learned that I have multiple spinal tumors around the conus medullaris and cauda equina. One of the differential diagnoses is leptomeningeal carcinomatosis - I am scare to ...
help
- By teray · Posted August 28, 2009
- 5 replies
- what are people doing to deal with the chronic pain ...
Losses
- By MariaKaminski · Posted August 27, 2009
- 3 replies
- Each person we let ourselves care about is just one more loss down the road. Do we not care about each other or do we give all of ouselves and live with the loss knowing we are better because we have ...
thanks to everyone who has been responding!!!
- By teray · Posted August 27, 2009
- 0 replies
- Weve decided to put it in gods hands!! Tired of dealing with the doctors runnarounds. We dont seem to get anywhere!!!! Constant repeat of tests they order and then say they were a waste of time. Too much ...
thanks to all who are helping us get through this
- By teray · Posted August 25, 2009
- 0 replies
- has anybody had complications with mri dye husband went for his test today and blood pressure spiked out of control!!!! Better now but we remembered with the last pheo a doctor had said not to have dye ...
Symptoms- enlarged red blood cells and blood in urine
- By mjohns31 · Posted August 24, 2009
- 12 replies
- My husband has vhl and was told last week, after several years of no symptoms of anything, that there is microscopic blood in is urine and his red blood cells are enlarged. The test was the same in May ...
found pheo
- By teray · Posted August 23, 2009
- 5 replies
- lymphnodes on liver anyone have information told us friday at 5 ordered test for tuesday this is a second go around for hubby looking for information please i dont think it looks good regular mri found ...
Afraid of failure
- By FridayThe13th · Posted August 22, 2009
- 13 replies
- I just got home late Wednesday night after my most recent trip to NIH. It was to remove the stents I had in my bladder and ureter from my kidney surgery in July. I'm planning at the moment for my next ...
I'M SO BORED ( and now on YouTube )
- By FridayThe13th · Posted August 13, 2009
- 4 replies
- I remember saying that I'd post a video when I had time and had told some friends I would so here it is: http://www.youtube.com/watch?v=CpxAO76Jr LY If anybody else is on YouTube let me know ...
