VHL Family Alliance Support Community

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Pheos in the liver

By ballroomdancer · New reply 12:50 pm
Discussion in Finding emotional support · 1 reply
I have a friend with VHL who has had pheos on her adrenal in the past. Now, she has a pheo in her liver, diagnosed by the Mayo Clinic. I did not know pheos could appear in the liver..Another organ to ...

surgery during the Blizzard of 2010 at NIH

By TinaDiane · New reply 12:39 pm
Journal · 2 replies
I am at NIH for follow up of lung lesions found during routine scans for my VHL. I have been followed here since March of 2009. I live in Oregon and have been lucky enough to come to NIH every 2-3 months ...

Anyone near Cleveland, Ohio?

By Christine29 · Posted 11:45 am
Discussion in Finding emotional support · 0 replies
I have just been diagnosed with VHL, and feel like I am the only person in the world who has it (which I know isn't true). It appears it does not run in my family, which I am SO greatful for, but I know ...

Medicaid

By Christine29 · Posted 11:38 am
Discussion in Financial and insurance issues · 0 replies
I first found out last year that I was sick, and do not have insurance coverage, and was (and still am) unemployed. To date, all tests/surgeries have been paid for by me, but mostly by the wonderful help ...

neurofibromatosis and pheo

By deb123 · Posted 9:08 am
Discussion in Health management issues · 0 replies
Hi, I found this site a few weeks ago and got some very helpful info about pheo. I also have neurofibromatosis and am wondering if anyone else has both of these conditions that has any helpful advice ...

VHL Meeting

By marie3 · New reply yesterday at 3:25 pm
Discussion in Finding emotional support · 1 reply
Joyce, I was wondering when an annual VHL meeting will be held in Chicago again. Any ideas? I wasn't able to attend the last one held here. Marie ...

surgery brain tumor

By nadep · New reply yesterday at 2:04 pm
Discussion in Health management issues · 4 replies
Hello, Last year in september i got a brainsurgery. Everything went good but now i still got pain. Painkillers wont work, even i take enough. It feels like my skin is still sleeping and like there is ...

Insurance Coverage

By knarf · New reply yesterday at 9:04 am
Discussion in Parenting issues · 5 replies
My 11 year old son was just diagnosed with VHL. I am concerned about the ramifications this may have on his ability to have health insurance throughout the course of his adult life. Can anyone tell me ...

You Opinion Needed urgently!

By joyceg98 · New reply February 7, 2010
Journal · 2 replies
I am working on the current newsletter and am a bit stuck. You can help me a great deal by providing your opinion in this short poll: http://www.surveymonkey.com/s/ZPHQQBV Thank you so much! Joyce ...

EYE TUMOR vhl

By Karol83 · New reply February 6, 2010
Discussion in Finding a doctor · 2 replies
My friend had a big tumor (4 mm) in her eye (VHL). After laser treatment she stopped seeing at this eye. What do you think of it is there anybody who know similar vision problems after therapy from experience ...

Tumor in Pancreas

By ssneelam · New reply February 5, 2010
Discussion in Getting a diagnosis · 14 replies
Hi, this morning I found out that my mom has a tumor in her pancreas, the doctor has not told us how big it is or if it is cancer, i did try to speak to him but he said "he doesn't know and will not know ...

Remembering my Dad

By joyceg98 · New reply February 3, 2010
Discussion in Finding emotional support · 12 replies
My father, Harry W. Wilcox, passed away January 22 in Memphis. He was 91 years old. He taught Anatomy in Medical School at the University of Pennsylvania and the University of Tennessee for 40 years ...

Tinnitus n head pressure

By lrodriguez · New reply February 2, 2010
Discussion in Getting a diagnosis · 3 replies
Hi Everyone May God continue to give us the strength to carry on.. has anyone had sudden tinnitus n head pressure ( no pain)? I have also noticed that I have been real "lazy" forthe past week. Please ...

confused about adrenal glands

By ballroomdancer · New reply February 2, 2010
Discussion in Finding emotional support · 3 replies
Ok, so i have read on here 3 things about living without your adrenal glands: 1. Tiredness 2. Weight gain 3. Trouble dealing with stress Is this true for everyone? I lost one adrenal gland 8 years ago ...

No adrenal glands and tired of it!

By Tiffanyrae · New reply February 1, 2010
Discussion in Health management issues · 3 replies
When I was only 4 months old I had a type of cancer called Neroblastoma. I had surgery that took both my adrenal glands along with radiation and chemotherapy. Iâ€™m now 28 and Iâ€™m tired all the time ...

Good News...but why?

By beccaloo · New reply February 1, 2010
Discussion in Health management issues · 4 replies
Not sure if this is the right "topic" but I'm going w/it. On the 25th of Jan I went to see my neurosurgeon. Last time I saw him was 2yrs ago. First time I saw him was about 6yrs ago b/c the neurosurgeon ...

Needing a Doctor

By timmy2toes · New reply January 27, 2010
Discussion in Finding a doctor · 3 replies
Does anyone know of a VHL Doctor in the Utah Wyoming area? I need to get into see one desperatly but have been unable to locate one ...

Heading to NIH

By donnab · Posted January 25, 2010
Discussion in Health management issues · 0 replies
I have my next trip to NIH scheduled now. I'll be flying in on Feb 28th and leaving on Mar 3rd. Would like to meet up with anyone else who might be there at the same time. I'll be at both the Eye Clinic ...

Looking for GI specialist who knows VHL near Burnsville MN

By arcteryxaimee · New reply January 25, 2010
Discussion in Finding a doctor · 1 reply
I have VHL with non-cancerous tumors on my pancreas and recently had the CT and MRI scans done but can not find a Dr. to take the scans to to find out the results. PLEASE HELP! I am in school most of ...

Need a VHL Dr. in Montana, rocky mountain region

By smallframe · New reply January 24, 2010
Discussion in Finding a doctor · 1 reply
Can someone please recommend a Dr. familiar with VHL in Montana? thank you ...

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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.