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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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Recommended
CANNIBAS SHRUNK MY TUMORS
- By diane1805 · Posted March 23, 2008
- Discussion in Medical treatments that worked for me · 3 recommendations
- I just want to share my experience with you all. It started three years ago when i read an article on the internet about cannibas , stating that it was responsible for shrinking tumors in , it particulary ...
dizzyness after brain surgery
- By oddmanout · Posted September 1, 2009
- Discussion in Health management issues · 2 recommendations
- hi there, I had a cerebellar hemangioblastoma removed on the 29th june this year. i spent 4 days in hospital and then they sent me home with some paracetamol! i recovered fairly quickly from the surgery ...
More questions than answers.
- By RosemarieB · Posted October 18, 2008
- Journal · 2 recommendations
- While sitting at home, recovering from surgery, I keep wondering why no one has come up with a man made protein that persons with VHL can take. They know the gene that produces the tumor suppressing protein ...
Is it possible I have VHL?
- By footballer · Posted October 9, 2008
- Discussion in Getting a diagnosis · 2 recommendations
- Hi I am a 20 year old male and I was just recently diagnosed as having the VHL gene through genetic testing. Many of my family members on my mothers side have the disease and have had symptoms, including ...
Need a friend
- By AlexAnderson · Posted August 20, 2008
- Discussion in Finding emotional support · 2 recommendations
- I need to find a friend who I'm like. Someone who is picked on in school, has a disease, ya'know, the works ...
Opportunity in Chicago Sat May 31 - info about clinical trials process
- By joyceg98 · Posted May 6, 2008
- Discussion in Medical treatments that worked for me · 2 recommendations
- On Saturday morning, May 31, Nancy Roach and Mike Katz are helping to convene a couple of focus groups of patient advocates at the 2008 American Society of Clinical Oncology (ASCO) meeting in Chicago ...
Brain Stem Surgery
- By christytaylor · Posted November 20, 2007
- Journal · 2 recommendations
- Has anyone had brain surgery done at anytie and eperienced loss of usage like with your hand or hands being numb or to where you can't use your body part ? I was justwondering, ecause back this past July ...
Cyberknife brain surgery
- By Raeanne · Posted January 23, 2007
- Discussion in Health management issues · 2 recommendations
- Has anybody else experienced complications from cyberknife brain surgery? I had the procedure done in August of last year and unfortunately, I've become ill from radiation induced swelling of the tissue ...
GOVERMENT RUN HEALTHCARE
- By Rick · Posted October 31, 2009
- Discussion in Financial and insurance issues · 1 recommendation
- 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 ...
Genetic Alliance Member
- By mll · Posted October 15, 2009
- Journal · 1 recommendation
- 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 ...
The Other Side of the Moon
- By MariaKaminski · Posted August 10, 2009
- Journal · 1 recommendation
- I was out on my porch swing and it was silent. No traffic, no noise, just me and the fire flies acrossed the street in the park. I looked up and noticed it was a full moon. It was a cloudy sky so there ...
Regaining sensation after spinal surgery.
- By TJ7334 · Posted July 31, 2009
- Discussion in Health management issues · 1 recommendation
- A dear friend of mine had spinal tumors related to VHL removed recently. He had lost some sensation in a leg/foot prior to the surgery. Now he has lost sensation in his lower torso, including the ability ...
Trouble writing?
- By ALB · Posted July 18, 2009
- Discussion in Medical treatments that worked for me · 1 recommendation
- Hi everyone, A few days ago, I came across someone mentioning that they have problems with one hand, especially with writing. I too have experienced this--a little after my first brain surgery and significantly ...
My son
- By Porq · Posted July 1, 2009
- Journal · 1 recommendation
- May 7th, 2009 is a day that I will never forget. It started out with that dreaded phone call at work insisting that I get home immediately. What was supposed to be a somewhat normal doctors visit for ...
Suspected of having VHL
- By kbien · Posted May 20, 2009
- Discussion in Getting a diagnosis · 1 recommendation
- I was recently diagnosed with RCC. I will have a partial nephrectomy next Friday. During the past couple of weeks I have discovered that my grandmother and great-grandmother both had kidneys removed ...
Primary healthcare
- By Ieva · Posted May 11, 2009
- Journal · 1 recommendation
- I haven't written for quite a period, to great extent because it turned out that I actually have Cowden's disease. However it is disease of the same kind and there are no support groups most likely because ...
Solve our Basic problem
- By wilson-hk · Posted May 10, 2009
- Discussion in Medical treatments that worked for me · 1 recommendation
- As we know, VHL is caused by genetic problem. we have to suffer to unlimited MRI,surgeries,SRS ( gamma knife, cyberknife and protron theopy ), and steriods until we die. I am VHL patient in HK, experienced ...
My life - an update
- By Sheela · Posted May 2, 2009
- Journal · 1 recommendation
- 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 ...
Just wanted to share some good news!
- By Myway · Posted April 23, 2009
- Discussion in Finding emotional support · 1 recommendation
- I always seem to ask for prayers, support and advice from this group, so just for once I would like to share a journey that has light shining through it. My son over the past eight months has had a spinal ...
Radiation Limit
- By MariaKaminski · Posted March 16, 2009
- Discussion in Health management issues · 1 recommendation
- Has anyone ever heard that they are limited on the amount of radiation one receives on a particular area and/or tumor? Is SRS or Proton Therapy part of that radiation limit ...
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