The VHL Family Alliance Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group
All new and active discussions & journals
Anyone with a child with Di Georege/VCFS
- By 22q11mommy · New reply yesterday at 9:45 pm
- Discussion in Finding emotional support · 2 replies
- Hello I joined tonight to see if anyone else knows or has kiddos with this syndrome. My daughter is three and would love to find someothers our there who might can tell me more info or what there child ...
FINALLY!
- By beccaloo · New reply yesterday at 3:37 pm
- Discussion in Financial and insurance issues · 1 reply
- I finally had my day in court...and I WON!! The whole thing started back in Jan.2001, and it's FINALLY OVER and we can move on! I applied for soc.sec.dis. in 2003 and after 2 denials, 2 appeals and 6 ...
im worried
- By simo · New reply yesterday at 1:03 pm
- Discussion in How my diagnosis changed my life · 9 replies
- Hello, Please is it possible for someone to give me some informations about what is happening with me?So how i wrote before many days ago,Im 30 years old and I have VHL.First surgey in septeember 2005 ...
VHL
- By kipp77 · New reply yesterday at 5:15 am
- Discussion in First in the family: mosaic? · 1 reply
- In Feb. of 2009, I underwent brain surgery to remove a 3cm hemangioblastoma in my right cerebellum. They told me because of the hemangioblastoma that they wanted to test me for VHL. I did the blood DNA ...
digeorge syndrome/vcfs
- By moc1 · Posted November 25, 2009
- Discussion in Finding emotional support · 0 replies
- I am an adult with digeorge syndrome . It is a rare condition that occurs in 1 : 4000 people. Is there any adults out there with this syndrome? I would love to hear from you. May God bless you ...
Thyroids
- By Beverly2 · Posted November 25, 2009
- Discussion in Health management issues · 0 replies
- I have a quick question here that was mentioned to me casually by another person with VHL. Is there any connection between VHL and thyroid tumors? (I assumed not but saw a recent post by someone with ...
Care Plans in the UK
- By joyceg98 · New reply November 25, 2009
- Discussion in Health management issues · 9 replies
- I understand that the UK National Health System has set a goal that everyone with a long-term condition be offered a Care Plan by June of 2010. Has anyone approached you about this? Have you requested ...
Television exposure
- By eramsteven · New reply November 24, 2009
- Discussion in Getting a diagnosis · 10 replies
- Just to let you know that VHL was mentioned on the ABC show, Private Practice last night. It had to do with preimplantation genetic testing of embryos with dwarfism. The doctor wouldn't implant becuase ...
VHL Warriors Please!
- By TinaDiane · New reply November 23, 2009
- Discussion in Finding emotional support · 3 replies
- I know this may be a sensitive subject, but I am going forth anyway. This website is for support with the disease VHL. Please, if you are struggling with a disease that is NOT VHL, please please find ...
vhl and disability
- By 16tumors · New reply November 23, 2009
- Discussion in Financial and insurance issues · 1 reply
- I'm 31 and just beginning my struggle with VHL. I work part-time but find that I can barely keep up wth my measly 20 hours/per week (that I need to keep my health insurance). I have to take so much time ...
Hemangioblastoma nightmare
- By Jankster · New reply November 20, 2009
- Journal · 30 replies
- Earlier this year my husband was diagnosed with a benign brain tumor located on the brain stem about the size of a half dollar, which was removed. The neurologist told us all the risk, but said they were ...
Vhl Disability Status Question
- By Eug · New reply November 19, 2009
- Discussion in Financial and insurance issues · 5 replies
- Hi, Just wondering if anyone knows whether Vhl is now classified as a disability, whereby annual MRIs/CTs can be considered part of essential routine health checks. For people with diabetes, the medication ...
Need information
- By lety · New reply November 19, 2009
- Journal · 4 replies
- Hi My name is Letty I was diagnosed with VHL in 2002. I have been doing MRI of my head on a yearly basis because both my dad and sister have VHL and have had tumors in the head removed. I have recently ...
Unnecessary surgery- what can we do?
- By Heather31200 · New reply November 18, 2009
- Discussion in Health management issues · 6 replies
- We just found out the other day that the spinal cord surgery that my husband had this May was unnecessary. We went to a specialist in Boston for a second opinion. The Neurosurgeon stated that my husband's ...
Pheochromocytoma or Paraganglioma?
- By joyceg98 · Posted November 17, 2009
- Journal · 0 replies
- Oxford Outcomes has asked us to post this notice. Oxford Outcomes is conducting a qualitative research study involving interviews with pheo/para patients in order to evaluate the clarity, relevance, and ...
Adreanal Insufficiency No More
- By VHLDNA · New reply November 15, 2009
- Discussion in How my diagnosis changed my life · 19 replies
- I had my bilateral adrenalectomy in 1986 and have been on hydrocortisone ever since. My current endocrinologist who I have been seeing for about one year has been concerned with the low dose I take. He ...
The beginning
- By sissy0513 · New reply November 15, 2009
- Journal · 15 replies
- Well, I was faced with having adrenal gland surgery and then found that I have tumors on both and will lose both, at 42 and a single mom this is distressing to me. I have a large amount of stress in my ...
Wishing you a good outcome
- By MaryP · New reply November 12, 2009
- Journal · 8 replies
- Like many of you, I am a sandwich VHL patient. My mother had the disease, I have it, and my daughter also has VHL. After so many tumors, and so many surgeries, I wondered if in some way I was "allowing ...
RENAL ANGIOLIPOMA ANYONE???....
- By sonia40 · New reply November 10, 2009
- Journal · 12 replies
- Hello everyone..... as you all know me for those people who are following my posts....i have been told that i have a 5cm Renal angiolipoma on my right kidney....(have not had a biopsy as yet)...i also ...
Waiting
- By rocksea · New reply November 9, 2009
- Discussion in Finding emotional support · 5 replies
- My mother was diagnoised with 2 brain tumors in June. She lost an eye to VHL in 1963 and is blind in the remaing eye. She has also lost one kidney and part of another to VHL. She is having major balancing ...
- More »
- New
- Active
- Discussions
- Journals
Sign in to see more
Inspire others
Group leaders
Discussion topics
- Getting a diagnosis
- How my diagnosis changed my life
- Financial and insurance issues
- Parenting issues
- Kids and teens
- Tips for caregivers
- Finding emotional support
- Finding a doctor
- Health management issues
- Medical treatments that worked for me
- First in the family: mosaic?
- Fundraising and raising awareness
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.