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confused

batley
  • By batley · New reply 4:45 pm
  • Discussion in Parenting issues · 3 replies
  • ive read some things on here about people bein tested for vhl and it commin back no vhl but they do have it , im confused , i have vhl and my daughter my son come back with a no but do i really beleave ...

Is it possible I have VHL?

footballer
  • By footballer · New reply 3:45 pm
  • Discussion in Getting a diagnosis · 3 replies
  • 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 ...

Just Learning about VHL

NewtoVHL
  • By NewtoVHL · New reply 3:38 pm
  • Discussion in Getting a diagnosis · 17 replies
  • This past week has been a whirlwind. Tuesday went in to the ER for some severe abdominal cramping and fatigue. An Abdominal CT scan detected a mass on each kidney and a mass on the liver and some lesions ...

Why are we here?

Brian
  • By Brian · New reply yesterday at 3:24 pm
  • Journal · 112 replies
  • When we started this community, each of us faced important health issues in our lives. Some of us have family members with medical conditions. Many of us have medical conditions of our own. All of us ...

Revolution!!!

Cancerkid777
  • By Cancerkid777 · New reply October 8, 2008
  • Discussion in Kids and teens · 3 replies
  • Reply, Make me a friend, do whatever you can to let me know that you're in! And when you're in, Tell your friends!!! (Fundraising Ideas Needed ...

Cancer since age 4

Cancerkid777
  • By Cancerkid777 · New reply October 7, 2008
  • Journal · 6 replies
  • Hey, I'm Cancerkid (Actualy, It's Alex) And I'm one of the youngest ever diegnosed with VHL. That's me in the top corner on the homepage! I have a very rough story, too. At age 4 I was unable to hear ...

brain/spinal tumor symptoms?

amykate
  • By amykate · New reply October 7, 2008
  • Discussion in Finding emotional support · 12 replies
  • I was diagnosed with VHL last October after discovering that I had a rather large endolymphatic sac tumor in my left ear. I had that removed in January. I currently have a tumor in my cerebellum and a ...

Update re: SRS treatment for spinal tumours

Myway
  • By Myway · New reply October 7, 2008
  • Discussion in Health management issues · 5 replies
  • As promised I said that I would let you know what questions we asked and their answers - as best I can. First, we spoke to my son's oncology consultant as he has carried out the two SRS treatments for ...

New VHL ad

FranMott
  • By FranMott · Posted October 7, 2008
  • Discussion in Getting a diagnosis · 0 replies
  • The VHL Family Alliance has an ad appearing in USA Today Magazine. It's out now. It's great! It can be found on page 21 E. We're excited! Please take a look. -Pass it around. It's another way we're working ...

Lemonade stand

Cancerkid777
  • By Cancerkid777 · New reply October 5, 2008
  • Discussion in Kids and teens · 1 reply
  • Hey, Cancerkid here. You know my lemonade stands that I told you about? Well I have another 9 in may!! My friends in school are sooooooooo great! Instead of one lemonade stand, I had so many volonteers ...

brain tumors

batley
  • By batley · New reply October 4, 2008
  • Discussion in Getting a diagnosis · 3 replies
  • hi all does anyone know about enfefalightus, sorry i know i spelt that very wrong , its where the fuild is bein blocked from the brain and its infected, my brother has been very poorly with this he has ...

Ear Tumors, and New to all this!?!

heatherbacon
  • By heatherbacon · New reply October 3, 2008
  • Discussion in Getting a diagnosis · 1 reply
  • It all started with the ear tumor, paraganglioma is what my Doctor said about 8 years ago. After 3 surgeries on my right ear, two surgeries on my neck to get rid of caroid body tumors,and a recent adrenal ...

Need a New VHL Doctor in Doylestown Pa Area

StillKickin
  • By StillKickin · New reply October 3, 2008
  • Discussion in Finding a doctor · 2 replies
  • Hello everyone, I am looking for a New VHL Doctor in Doylestown Pa Area. Just moved here. I am seeing Dr. Shipkin (Neurologist) who has had experience with VHL, but I need a Dr. to see on a regular basis ...

Spinal Symptoms??

Melbeth
  • By Melbeth · New reply October 2, 2008
  • Discussion in Getting a diagnosis · 9 replies
  • I was just wondering how different people's spinal tumors or cysts first began to present themselves. I've been having some neck and lower back pain, but don't want to jump to any conclusions. I'm also ...

eye tumors

batley
  • By batley · New reply September 30, 2008
  • Discussion in Health management issues · 6 replies
  • hi ive read some stuff on eye tumors by the opic nerve, now ive had one there for 6 yrs and its been ok untill now , just been told its got slightly bigger , ive always been told that i should never have ...

kidney tumors

batley
  • By batley · New reply September 29, 2008
  • Discussion in Getting a diagnosis · 7 replies
  • can anyone tell me what is the size of a kidney tumor can go to befor it should come out , my brother has one at 3cm .9 he been told ...

Developing Asthma After Intubation

jmathison
  • By jmathison · New reply September 29, 2008
  • Journal · 3 replies
  • I underwent a lobectomy because of a sizable VHL tumor in the mid portion of my lung. Both surgery and recovery went well. And then a few weeks later I developed asthma. I assumed irritation to the lung ...

SRS treatment for spinal tumours

Myway
  • By Myway · New reply September 29, 2008
  • Discussion in Health management issues · 17 replies
  • First I would like to thank you all for your prayers, my son had a spinal tumour removed and a syrinx decompressed last Tuesday 19th, he is home and recovering well! My son has another symptomatic tumour ...

Treatment of optic nerve tumors

AEckerman
  • By AEckerman · New reply September 26, 2008
  • Discussion in Kids and teens · 23 replies
  • Once again, I am on a mission to find the latest information in dealing with optic nerve tumors. My 16 year old daughter, Chloe, has three eye tumors. One on the optic nerve, the other two in the other ...

Mom's Cataracts

beccaloo
  • By beccaloo · New reply September 25, 2008
  • Discussion in Getting a diagnosis · 2 replies
  • I've been diagnosed w/VHL for about 6 yrs. now and am, what I like to call "Circling the Airport" status. This means right now we're waiting and monitoring. I get my kidneys, pancreas, and brain + spinal ...

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The VHL Family Alliance Support Community connects patients, families, friends and caregivers for support and inspiration. The VHL Family Alliance Support Community is sponsored by the VHL Family Alliance in partnership with Inspire.