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Welcome to Inspire!
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Active journals
Renal Cell Carcinoma
- By mll · Posted October 15, 2009
- 0 replies
- Subject: renal cell carcinoma patients Hello, By way of introduction, my name is Lauren Haddaway and I work with a company called Snow and Associates. We believe that authentic human voices are the best ...
Genetic Alliance Member
- By mll · Posted October 15, 2009
- 0 replies
- From: "AnneMadeo" Date: Wed, 14 Oct 2009 12:06:59 To: Genetic Alliance Member Email List Subject: [memberforum] NIH research into experiences of parents with a child who is undiagnosed The National Human ...
UPDATE ON MY UPCOMING SURGERIES
- By sonia40 · New reply October 15, 2009
- 6 replies
- Hello all well its been a while since ive been on this site...mainly because ive been so busy moving home..finally settled....for those wonderful and caring people who have been reading my posts i just ...
Visit to Netherlands
- By joyceg98 · Posted October 12, 2009
- 0 replies
- Sunday and Monday I have met with a series of physicians here in the Netherlands, talking about how VHL is managed here, and learning from their experiences. In the Netherlands there are two primary centers ...
Netherlands VHL meeting
- By joyceg98 · New reply October 12, 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 ...
After brain surgery
- By carilyn · New reply October 9, 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 ...
....
- 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 ...
Urologist in Phoenix area
- By joyceg98 · New reply October 1, 2009
- 7 replies
- We have a member who is looking for a good urologist in the Phoenix, Arizona, area. Any suggestions? Thank you, Joyce ...
My life - an update
- By Sheela · New reply September 23, 2009
- 3 replies
- In August 2008 i had started feeling unwell again. I knew from the MRI scans that i had another haemangioblatoma on the right side of the cerebellum. I was told by the surgeon that he did not expect it ...
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 ...
your not alone
- By agent69 · New reply September 21, 2009
- 1 reply
- I am 54 years old and have been riding the VHL rollercoaster for 25 years. VHL has taken all the material possesions I had accumulated in my first 28 years, "it" took away one marriage, what was left ...
Does she or doesn't she???
- By joyceg98 · New reply September 17, 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 · New reply September 5, 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 · New reply September 5, 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 ...
help
- By teray · New reply September 3, 2009
- 5 replies
- what are people doing to deal with the chronic pain ...
Afraid of failure
- By FridayThe13th · New reply September 3, 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 ...
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 ...
Symptoms- enlarged red blood cells and blood in urine
- By mjohns31 · New reply September 1, 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 ...
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 ...
