VHL Family Alliance Support Community

The VHL Family Alliance Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group

Pilot trial "Dovitinib"

By pmedi1 · New reply 2:09 pm
Discussion in Health management issues · 5 replies
Has any one out there been on the pilot trial "Dovitinib"? I just got back from Houston. And after all my scans, my tumor or tumors in my only kidney are growing again :( My Dr adviced me he would like ...

Whipple

By VALPO · New reply 2:06 pm
Discussion in Tips for caregivers · 7 replies
My 16 year old granddaughter will have a whipple within the next few weeks after a biopsy is done. I know it will be a complicated surgery. I would appreciate any input on what to expect right after the ...

pregnancy gone wrong

By Jordan22 · New reply 1:56 pm
Discussion in Parenting issues · 3 replies
A few months ago I wrote a discussion about expecting a child and the concerns I had because I have vhl.While pregnant I became VERY sick to the point I could no longer eat, the symptoms I experienced ...

Tumor Imbedded in Spinal Cord

By MrsTreloar · Posted 1:35 pm
Discussion in Finding emotional support · 0 replies
Hello, About 7 weeks ago Dr.Martin at UCLA attempted to remove a tumor from my husband's spinal cord - right behind his belly button (I forget the T/L numbers). My husband is blind (hemangioblastomas ...

spinal cord tumor

By Steffo · New reply 1:11 pm
Discussion in Health management issues · 1 reply
I have just recently been diagnosed with a golf ball sized tumor (we named him Spalding) on the outside of my spine (with it growing into my spine about 3 to 4 nerves deep) and one tumor inside my spinal ...

May Madness Sale! Free Kindle versions of Handbook

By joyceg98 · Posted yesterday at 4:31 pm
Journal · 0 replies
Hey, everyone! The Kindle version of the VHL Handbook as well as the Kids' Edition will be going on May Madness sale beginning midnight May 25 (Friday) and ending Wednesday May 29. Be sure to get your ...

Variants of Unknown Significance

By janderson1 · New reply yesterday at 3:32 pm
Discussion in Getting a diagnosis · 12 replies
Hi everyone, I'm new to the group and joined because a discussion popped up when I did a Google Search related to my work. I'm a Research Scientist with a lot of experience in the field of Human Genetics ...

Pepper and Adrenal Blood Test

By provb356 · New reply May 19, 2013
Discussion in Health management issues · 5 replies
Hi Everyone- My husband and I are going to NIH for the first time next week. He is going to be evaluated for kidneys but since he has never been seen at NIH, they are doing a full work up on him over ...

Five million

By Brian · New reply May 18, 2013
Journal · 205 replies
Dear members, Yesterday, Inspire reached a milestone: five million posts written by members! Each of these posts, and the 700 million words they contain, are a simple measure of how much we all do to ...

VHLFA Annual Family Meeting

By VHLFA_Director · Posted May 16, 2013
Discussion in Health management issues · 0 replies
Join us at the VHLFA Annual Meeting Sept 21 in Ann Arbor, Michigan. Register Now and get a reduced registration: www.vhl.org/meeting/meeting2013 Agenda includes: VHL and the Central Nervous System: Stephen ...

Malpratice case if the Dr. does not remove the brain tumor?

By diane65 · New reply May 15, 2013
Discussion in Health management issues · 5 replies
Hi I am looking for an opinion/answer. I (thought) i had my brain tumor removed last April. Surgery went well and I came back home to recover. After a few weeks I had some major problems recovering. Walking ...

Life Insurance Cover and Critical Illness Cover

By Just_Research · New reply May 15, 2013
Discussion in Financial and insurance issues · 10 replies
Good afternoon I'm wondering of someone can please guide me in the right direction or enlighten me if you have dealt with this before. I have VHL Syndrome and wanting to get life cover and critical illness ...

Vhl and acupuncture

By Eug · New reply May 15, 2013
Discussion in Finding a doctor · 2 replies
Hi, I have seen that some Vhl patients have had acupuncture. I never really thought it would be safe because of the 'increasing bloodflow' claims, but I am encouraged to think that it might be OK. Our ...

Shredding for Charity

By joyceg98 · Posted May 14, 2013
Journal · 0 replies
If you live anywhere in the Boston-Providence area, there is a SHREDDING EVENT this Saturday, all day at Miller Recycling. For $3 per box (which they will donate to VHLFA) they will shred your documents ...

VHL and Pregnancy

By Jordan22 · New reply May 14, 2013
Discussion in Parenting issues · 4 replies
Hello everyone, it's been awhile since I've been on here, I had aot going on.But I am doing well!!!The biggest change that has happened I my life since I've last been on here is that I foundout that I ...

Some Very Special Mothers

By Mickeral · New reply May 12, 2013
Journal · 1 reply
Where there is no struggle, there is no strength… Oprah Winfrey@BrainyQuote Dear Fellow Travelers: May I offer a big Mother's Day salute to all of you ladies who face tremendous struggles against what ...

Spinal shock after VHL Spine Tumuor Surgery

By Gody · New reply May 11, 2013
Discussion in Finding emotional support · 6 replies
underwent excision of the tumour and woke up with a complete spinal cord lesion below T10/11. Initially was informed the spinal shock would last for a month but nothing really has changed. I need information ...

Multifocal bilateral rcc. VHL?

By Boxermom · New reply May 10, 2013
Discussion in Getting a diagnosis · 4 replies
I have open partial nephrectomy on my right kidney scheduled for June 4th. My ct scan shows the following: CT of the abdomen and pelvis without and with contrast from 04/04/2013, showed 2 masses on the ...

Colorado VHL Doctors?

By AZ-Patricia · New reply May 9, 2013
Discussion in Finding a doctor · 11 replies
I just moved to Broomfield, CO and need new VHL doctors. Neurosurgeon, Neurologist, Ophthalmologist (Retina surgeon), Otology and Neurotologist or Audiologist (Ear specialist), Oncologist, and a Primary ...

BHD Facebook Group

By mom2three · New reply May 9, 2013
Discussion in Birt-Hogg-Dube (BHD) · 2 replies
Mainly a discussion place for patients, but anyoned interested may request to join and it is a closed group (only members can see posts) https://www.facebook.com/groups/45461514 7912181 ...

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VHLFA: Join us for VHLFA's Annual Meeting Sept 21 in Ann Arbor, MI. Register Now : http://t.co/0QTcRPQnKI http://t.co/pBBTI2nKfr

VHLFA: We're getting a check for $40.14 from iGive. Please help us by joining for free at http://t.co/9ujOkRhCY4. #iGiveDoYou

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VHLFA: Introducing a new VHL Teen Group on Facebook. Contact Ilene at director@vhl.org for more information. This is a safe, secret place where...

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About this community

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.