VHL Family Alliance Support Community

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HLRCC

By brsumo · New reply September 6, 2010
Discussion in Getting a diagnosis · 13 replies
Glad to FINALLY find others affected by this cancer syndome. I was recently diagnosed via cutaneous biopsy and genetic testing. I've only had a renal sonogram recently (nothing found) but have appointments ...

My wonderful sister

By diaryofageneticdefec · Posted September 6, 2010
Journal · 0 replies
In 2011 my big sister Jo will turn 40. To mark this occasion most people throw a party, put pictures around of when they were oh so much younger but not my sister; she is going to attempt to run but defi ...

two spine surgeries in one week and now so many problems.

By mollie121771 · New reply September 6, 2010
Journal · 3 replies
I had two spine surgeries July 26th and July 29th. Surgeries went well and I went home on July 31st. Was doing good for about three weeks and then I got really sick. I was feeling weak, tired, pulse rate ...

One couple's experience with PGD

By joyceg98 · New reply September 6, 2010
Discussion in Parenting issues · 3 replies
The following article has been submitted by a couple from Spain. We intend to publish it, either in the current newsletter (September) or in the January issue. I would appreciate your feedback on this ...

HLRCC?

By Txmommy26 · New reply September 3, 2010
Discussion in Kids and teens · 14 replies
Hello, We just found out that our 10 year old daughter has HLRCC. I know this isn't the group for that but the HLRCC website said that people could post here. We've been on a rollercoaster for a year ...

Seizure Activity and Brain Tumors

By lifeandhope · New reply September 3, 2010
Discussion in Health management issues · 1 reply
I am having what my doctor thinks is seizure activity, most likely being caused by one of the four brain tumors I have on my cerebellum. My jaw is unvoluntarily moving up and down constantly and I cannot ...

Neurological changes after cerebellar hemangioblastoma resection

By vhlfact · New reply August 30, 2010
Discussion in First in the family: mosaic? · 4 replies
My son (16 years old) had a cerebellar hemangioblastoma removed 1/2006. Reportedly there was a very small piece of his cerebellum that needed to be removed. He is 4 1/2 years post op (from that tumor ...

A few more words about privacy

By Brian · New reply August 27, 2010
Journal · 76 replies
All of us at Inspire care a great deal about your privacy and work hard to ensure the information you trust us with is kept safe. We designed Inspire so that you have complete control over how your personal ...

pheochromocytoma

By Trishacat · New reply August 26, 2010
Discussion in Getting a diagnosis · 10 replies
My Husband had a MIGB scan to see if he has a pheochromocytoma. His endocronologist will only tell us that he "may" have one on his right adrenal gland. She referred him to a surgeon and when we ask questions ...

zd6474 protocol

By littlesis64 · New reply August 25, 2010
Journal · 3 replies
I really need to speak with someone who is in this protocol at National Institutes of Health. I am considering this protocol but I have been informed that I will have to have weekly EKG's. That is concerning ...

Kidney tumor

By VALPO · New reply August 25, 2010
Discussion in Getting a diagnosis · 6 replies
My son-in-law has a tumor (3+ cm) on his kidney also tjhey are checking a spot on his brain that showed on his recent mri. They are doing more folowup on the brain but sai surgery is required for the ...

VHL, My and Me blog

By Hi_its_suellen · Posted August 24, 2010
Discussion in How my diagnosis changed my life · 0 replies
I started a blog about VHL and our family http://vhlmymomandme.blogspot.com ...

VHL and confused!

By Caterine · New reply August 24, 2010
Discussion in How my diagnosis changed my life · 11 replies
I feel like my family and I are the only one's from Montreal, Canada registered on this site. I'm new at this... I have 2 boys and I just found out that they both have vhl. My healt issues seem pretty ...

Incontinence from Spinal Surgery

By AngieUK · New reply August 21, 2010
Discussion in Health management issues · 6 replies
I'm trying to find out if anybody with VHL has had surgery to remove a tumor from the spine and has suffering from incontinence after surgery. My sister had surgery to remove a very large tumor several ...

Interesting article in NY Times

By Ariel · New reply August 20, 2010
Discussion in Finding emotional support · 3 replies
I recently posted an article from the NY Times to the Facebook group that I thought seemed relevant to the VHL community. When we go through difficult times (i.e. getting a diagnosis of VHL, you or a ...

I am a 21 year old female with VHL in Victoria BC

By sarahanneprice · New reply August 19, 2010
Discussion in Fundraising and raising awareness · 2 replies
I am 21 years old and was diagnosed with VHL at 6. My mother has it too. She has had both kidneys removed and a brain transplant. I had my eye removed this year, and I have three tumors in my right eye ...

VHL Doctor

By Christine29 · New reply August 17, 2010
Discussion in Finding a doctor · 5 replies
I currently have speciality doctors for each area I have VHL issues (kidney, brain, pancreas). I'm wondering if there is a type of doctor that just specializes in VHL in general? I know I need to keep ...

Is dizzy spells part of VHL?

By fwc · New reply August 16, 2010
Discussion in Getting a diagnosis · 6 replies
We are tying to find someone in canada that knows about treatment for VHL the most recent symtom is major dizzy spells that effects my balance (hard to walk) and body shakes ...

Deaths by VHL

By Christine29 · New reply August 15, 2010
Discussion in Health management issues · 7 replies
When I was diagnosed with VHL earlier this year my doctors told me that since we knew about it I would be monitored closely and any tumors would be removed before they became deadly. The way I understood ...

Flash and fog in the eye

By joyceg98 · New reply August 11, 2010
Discussion in Medical treatments that worked for me · 3 replies
We have been contacted by Asma, a young woman college student in Algeria, who has a DNA diagnosis of VHL. She is experiencing her first symptoms in th eye and is very afraid, especially since her father ...

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The VHL Family Alliance Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the VHL Family Alliance, an Inspire trusted partner.