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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!
Recommended discussions
Oprah's Big Give
- By wheelchairman36 · Posted March 17, 2008
- In Finding emotional support · 5 recommendations
- I know lots won't know who I am because been a long time since posting. Oprah has gave 10,000 dollars to our local ABC affiliate to desperse among 4 organizations and the one has chosen me to recieve ...
CANNIBAS SHRUNK MY TUMORS
- By diane1805 · Posted March 23, 2008
- 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
- 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 ...
Is it possible I have VHL?
- By footballer · Posted October 9, 2008
- 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
- 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
- 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 ...
Cyberknife brain surgery
- By Raeanne · Posted January 23, 2007
- 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
- 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 ...
Regaining sensation after spinal surgery.
- By TJ7334 · Posted July 31, 2009
- 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
- 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 ...
Suspected of having VHL
- By kbien · Posted May 20, 2009
- 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 ...
Solve our Basic problem
- By wilson-hk · Posted May 10, 2009
- 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 ...
Just wanted to share some good news!
- By Myway · Posted April 23, 2009
- 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
- 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 ...
vhl
- By ireland22 · Posted March 11, 2009
- In First in the family: mosaic? · 1 recommendation
- I along with 8 others in my family have vhl , my sister is the only one who has not the gene, what im asking is , cause she has a child , would the child need to be tested for vhl ...
VHL on Facebook and Myspace
- By Ariel · Posted October 23, 2008
- In Fundraising and raising awareness · 1 recommendation
- Hi everyone, To start off, let me introduce myself; I am a junior in college, and six years ago, my mother and sister were diagnosed with VHL. Since my family found out about VHL, I have committed myself ...
Ten Months out
- By plischeske · Posted October 13, 2008
- In Finding emotional support · 1 recommendation
- On December 17th, 2007 I underwent surgery at UCSF in which they removed a pretty big hemangiomablastoma from my cerrabellum. Another Surgeon had tried to remove it back in 1994, but was worried about ...
tumors and syringomyelia
- By Kar · Posted October 13, 2008
- In Medical treatments that worked for me · 1 recommendation
- hello ...
Nano-foods: The next consumer scare?
- By gale · Posted August 1, 2008
- In Health management issues · 1 recommendation
- By Barbara Liston ORLANDO, Florida (Reuters) - Those consumers already worried about genetically engineered or cloned food reaching their tables may soon find something else in their grocery carts to ...
Bench Surgery
- By Hermvr · Posted July 22, 2008
- In Medical treatments that worked for me · 1 recommendation
- Hi there, I have been diagnosed with VHL in 1999. It was first noted due to bad eye sight. After a number attempts of laser, that was not successful, the doctor decided to try and cut off the blood flow ...
