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

Join today

All new and active discussions & journals

more dumb doctor stories

dizzybee
  • By dizzybee · Posted 5:10 pm
  • Journal · 0 replies
  • I think I had a heart attack, pretty dang sure. Chest pain, numbness in left arm and left side of face. Had hubby drive me to fire station (around the corner) they were getting bps of 136/114 132/112 ...

Kidney biopsy

dizzybee
  • By dizzybee · Posted 5:06 pm
  • Journal · 0 replies
  • I'm scheduled to have a kidney biopsy w/n the next few days/weeks (just saw my neph today, so don't have the date yet). My creatinine level has went from 1.55 in Oct to 1.90 in Dec. I've had an ultrasound ...

Ocular tumors

marie3
  • By marie3 · New reply 2:05 am
  • Discussion in Health management issues · 12 replies
  • Hello Group, I'm sure you all know me by my eye issues. My very ill eye has been quiet for almost a year. Let me give you little refresher. I have an ocular tumor that was discovered about 7 years ago ...

Powerful Patient - musings on life and health

joyceg98
  • By joyceg98 · New reply January 2, 2009
  • Journal · 1 reply
  • I read an article today that shows a dramatic connection between what we eat and how we feel. 230 young offenders at a maximum security prison in England were enrolled in a nutrition study. Half were ...

Help!!

Deededell
  • By Deededell · New reply January 1, 2009
  • Discussion in Finding emotional support · 5 replies
  • I feel so alone and am hoping that their is someone out there that can help me feel better. I got the next slap in the face this week when my blood sugars went above 350. Now I have type 2 diabeties ...

Latest VHL radio show

joyceg98
  • By joyceg98 · New reply December 30, 2008
  • Discussion in Health management issues · 18 replies
  • This week's radio show is about Appreciating Kidneys. In it we talk about how to take care of your kidneys, and what to do if they no longer work. I talk about my son's experience on dialysis, and about ...

Any Info on combination of kidney and spine Chemo Drugs

StillKickin
  • By StillKickin · New reply December 29, 2008
  • Discussion in Medical treatments that worked for me · 2 replies
  • Any Info on thalidomide, temozolomide, or Auastin (bevacizumab) Chemo Drugs being used for treating kidney and spine tumors ...

Any spouses/significant others of VHL patients here?

Michelle76
  • By Michelle76 · New reply December 28, 2008
  • Discussion in Tips for caregivers · 10 replies
  • I don't know if this discussion board is mostly for patients, but I've been really stressed lately, and a friend found the site for me and told me I had to join or she was going to email someone for me ...

Treatment and alternative medicine

romcaromca
  • By romcaromca · New reply December 28, 2008
  • Discussion in Medical treatments that worked for me · 1 reply
  • Hello all, my name is Marek and I'm from the Czech republic. My 27-years old wife has had two hemangioblastoms removed from C-5 and Th-10 two months ago. Now we are looking for treatment against VHL and ...

Relocating to Maryland with VHL

cmitchhall
  • By cmitchhall · New reply December 28, 2008
  • Discussion in Health management issues · 1 reply
  • Hi my name is mitch I have had active VHL for 21 years currently I live in Colorado but will be relocating to Maryland in early 2009. I previously was studied at NIH many years ago does anyone know of ...

spinal cord tumours

judy_mx
  • By judy_mx · New reply December 28, 2008
  • Discussion in Health management issues · 11 replies
  • My 12 yr old son has been diagnosed with tumours on the C3 and T11. Has anyone had tumours in these positions and what was the treatment you received ...

Help paying for medical bills...any ideas or help?

JHough12
  • By JHough12 · New reply December 28, 2008
  • Discussion in First in the family: mosaic? · 3 replies
  • I was diagnosed with VHL in June of 2008 and since then I have had 3 surgeries, two of which were done at the Mayo Clinic in Rochester, MN. Yesterday when I went to let them make copies of my Medicaid ...

Pancreas tumor

kimbre
  • By kimbre · New reply December 24, 2008
  • Discussion in Health management issues · 25 replies
  • I have a small pancreas tumor that is described as an "islet cell neoplasm in the uncinate process (the head of the pancreas)". Has anyone had one of these? If so, what were the symptoms you experienced ...

Merry Christmas

diaryofageneticdefec
  • By diaryofageneticdefec · Posted December 22, 2008
  • Discussion in Finding emotional support · 0 replies
  • Wishing everyone affected by VHL a Merry Christmas and a positive New Year. Lets hope that there is a major breakthrough in 2009. I know we hope for it all the time, because hope is all some of us have ...

Revolution!!!

AlexAnderson
  • By AlexAnderson · New reply December 21, 2008
  • Discussion in Kids and teens · 7 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 ...

Aye eye!

claireabell
  • By claireabell · New reply December 21, 2008
  • Discussion in Medical treatments that worked for me · 5 replies
  • Hey everyone, I have massive scar tissue on my right eye and need more treatment for angiomas but the doctors are scared that my retina will detatch if I have more treatment. I have been having treatment ...

NDRI

gale
  • By gale · New reply December 19, 2008
  • Discussion in Health management issues · 3 replies
  • They have extended the VHL tissue donation program for 6 months. If you file your DNA mutation with NDRI (tissue bank), the VHL Family Alliance will be able to mail you $100 for this very valuable donation ...

Type of VHL

Beverly2
  • By Beverly2 · New reply December 18, 2008
  • Discussion in Health management issues · 17 replies
  • I've seen many people referring to type 2B in the discussions lately, and I was just wondering how you know that you have type 2B. When we were given Steven's genetics results, no mention was made of ...

VHL studies and cancer drugs

Beverly2
  • By Beverly2 · Posted December 18, 2008
  • Discussion in Health management issues · 0 replies
  • I recently saw (maybe in the USA Today VHL ad) that four cancer drugs have been developed from VHL studies. I'm assuming that two of these drugs are Sutent and Avastin. What are the other two drugs, and ...

Why are we here?

Brian
  • By Brian · New reply December 16, 2008
  • Journal · 136 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 ...

New members

Please sign in to see new members. New user? Join here.
Forgot password?
Keep me signed in on this computer until I sign out

Inspire others

Together we're better - VHL Family Alliance Support Community

Support your group with badges for your e-mail, website, blog, and more ...

Discussion topics

You

About this group

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.