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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.
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Discussions
Watch out for Prozac!
- By investigator2009 · Posted July 1, 2009
- In Health management issues · 0 replies
- My mother has VHL, and we all know that there is something different in each of us that changes our health state. Well, for her, tumor growth always happens when she is stressed or depressed. At both ...
VHL???Maybe???
- By Porq · Posted July 1, 2009
- In Getting a diagnosis · 6 replies
- My son recently spent a month at Mayo Eugenio Litta Children's Hospital to stabilize his bp and lower his heart rate before they could take out his 3 pheos and both adrenals. During this time he was tested ...
tumours on the optic nerve
- By diaryofageneticdefec · Posted June 30, 2009
- In Health management issues · 0 replies
- I've known about the tumour on my opic nerve for over 10 years now. It grew a little when i was pregnant a couple of years ago but just this week it bled. I'm waiting to hear from my consultant what he ...
Care Plans in the UK
- By joyceg98 · Posted June 29, 2009
- In Health management issues · 4 replies
- I understand that the UK National Health System has set a goal that everyone with a long-term condition be offered a Care Plan by June of 2010. Has anyone approached you about this? Have you requested ...
living with vhl is difficult
- By teray · Posted June 24, 2009
- In Finding emotional support · 3 replies
- looking to discuss ways of living with vhl disease ...
Frustration and false starts
- By joyceg98 · Posted June 21, 2009
- In Getting a diagnosis · 0 replies
- We are looking for frustrating stories about a delayed diagnosis of VHL, to help young doctors learn. Were you told it was something else, only to lose valuable time in identifying the real problem? I ...
VHL and Livestrong
- By lifeandhope · Posted June 19, 2009
- In Fundraising and raising awareness · 1 reply
- Great news about Livestrong adding VHL to it's dropdown box of types of cancer!!! This is great exposure ...
Group Discussion
- By ZeshanAhmad · Posted June 15, 2009
- In Parenting issues · 1 reply
- i want to talk for the group discussion any one willing to conversate ...
Son born with no eyes
- By ericmab · Posted June 15, 2009
- In Finding a doctor · 6 replies
- My first child was born on May 4, 2009 with a rare genetic condition known as Fraser's Syndrome. His eyes are covered by skin and, according to our surgeon, the MRI's suggest that his globes are useless ...
"Letting the Patient Call the Shots"
- By FranMott · Posted June 8, 2009
- In Finding a doctor · 2 replies
- The New York Times had an article in it by Pauline W. Chen, MD (published June 4, 2009) titled: "Letting the Patient Call the Shots". It centers around an interview with a Harvard pediatrician, Dr. Berwick ...
Pheocromocytoma
- By beod · Posted June 8, 2009
- In Fundraising and raising awareness · 5 replies
- I have whats called a "Pheo" in the medical world, or a tumour on my adrenal gland. I've started a blog to document my experience and provide a little insight for anyone going through a similar situation ...
haemangioblastoma in superior vermis - operation or radiosurgery?
- By RayLi · Posted June 6, 2009
- In Getting a diagnosis · 1 reply
- I had an operation on cerebellar haemangioblastoma (35mm with cyst) in 2001 and an operation on kidney after that in Singapore. Then I was diagnosed as VHL. Now I am living in Canada. The recent MRI scan ...
Help! Who looks after which bit??!!
- By Myway · Posted June 6, 2009
- In Health management issues · 6 replies
- We as a family have lived with VHL for the past eight years, my son is the first in the family, his lesions are predominantly in his CNS. He does however have numerous cysts on his pancreas, and kidneys ...
What should be the last resort?
- By mkj · Posted June 3, 2009
- In Health management issues · 3 replies
- Decision time is near. Now that surgical resection is not longer feasible for the multiple hemangioblastomas my son has developed in his brain and spine, what should be the next step, radiation therapy ...
dysphagia and bacllofen
- By dani · Posted May 30, 2009
- In Health management issues · 0 replies
- over two years ago i had a spinal cord tumor resected and resulted in paralysis. in rehab i was given baclofen. i just got out of the hospital for dysphagia (difficulty swallowing) but none of the docs ...
cryotherapy, any experience/suggestions?
- By Kertitans · Posted May 28, 2009
- In Health management issues · 2 replies
- My girlfriend was recently diagnosed with VHL when she was also diagnosed with RCC. She has a 3.4 cm malignant tumor in the right kidney and her left is heavily populated with cysts, two of which are ...
Agressive Hemangioblastomas
- By mkj · Posted May 28, 2009
- In Health management issues · 9 replies
- I am new to the discussion board. My son has been tested twice for VHL and the tests came back negative. He has had two surgeries to remove HBs from his cerebellum, one six years ago and the other two ...
VHL Family Alliance Annual Meeting - June 27 - Anaheim, CA
- By camron94 · Posted May 26, 2009
- In Health management issues · 1 reply
- Hello everyone! I am pleased to let everyone know that the 16th Annual Meeting of the VHL Family Alliance will be held next month in Anaheim, CA! Please join us for a great day of learning, sharing and ...
Manuka Honey
- By Myway · Posted May 21, 2009
- In Health management issues · 3 replies
- Just a quick question - Has anyone heard of any benefits of Manuka honey - I have read that it is beneficial to recovery, internal and external? Thank you :o ...
Suspected of having VHL
- By kbien · Posted May 20, 2009
- In Getting a diagnosis · 6 replies
- 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 ...
