Journals

VHL AND ILL HEALTH RETIREMENT

rollsroyce
  • By rollsroyce · Posted yesterday at 5:14 am
  • 5 replies
  • I live in the uk and was diagnoised with VHL 18 years ago and I have had surgery to remove a tumour. I work full time and I feel this illness does really drag me down at times fatigue etc. Would or could ...

pheocromcytoma

rollsroyce
  • By rollsroyce · Posted yesterday at 5:05 am
  • 2 replies
  • I had and adrenalectomy in 1998 and have annual screening each year. I am experiencing neck and back pain and sometimes have difficulty walking. I also have a very swollen abdomen and and pain in my pelvic ...

"A wake-up call from a young e-patient: 'I need to be heard'”

John2
  • By John2 · Posted April 15, 2014
  • 0 replies
  • From: John Novack, Communications Director, Inspire 4/15/14 Dear members, I am writing to share with you a new guest column in "Scope," the Stanford University School of Medicine's medical blog: "A wake-up ...

Taking the sting out of cancer

joyceg98
  • By joyceg98 · Posted April 13, 2014
  • 4 replies
  • Mike and I spoke with Shannon and Dave from Wind River Cancer Wellness Retreats in the beautiful woods of North Carolina. They offer retreats -- free of charge -- to men and women living with any kind ...

Emily B. sings BRAVE!

Maple123
  • By Maple123 · Posted April 11, 2014
  • 0 replies
  • http://youtu.be/0WBoL95hE0Q Emily B. sings BRAVE! and "SOLITUDE" !!!! http://youtu.be/Aea4KC37iCs (Also register now at www.vhl.org/databank ...

Ilene, Lizzie and Joyce at IKCC

joyceg98
  • By joyceg98 · Posted April 11, 2014
  • 0 replies
  • Ilene Sussman, Lizzie Perdeaux, and Joyce Graff attended the International Kidney Cancer Coalition meeting in Amsterdam. Many of our global VHL partners were there too: Dr. Rachel Giles of the Netherlands ...

Life would be tragic if it weren't funny.

Heisenberg
  • By Heisenberg · Posted April 3, 2014
  • 5 replies
  • There are times when we need impartial opinions to infuse a conversation with a fresh perspective. There are times when like minded people, or those that find common ground through a shared experience ...

Everyone gets stressed sometimes, but...

Maple123
  • By Maple123 · Posted March 29, 2014
  • 0 replies
  • This month's Wellness E-letter talked about stress management and inspired me to look into it some more. http://www.vhl.org/wordpress/patients-ca regivers/resources/wellness-e-letter/ It seems like we ...

Our second annual report with Stanford Medical School

Brian
  • By Brian · Posted March 19, 2014
  • 0 replies
  • We just finished a brand new special report, “Experts by experience 2014: A compilation of patients’ stories”, in partnership with the Stanford University School of Medicine. It is a 31-page collection ...

Hitting a milestone -- 5,000 photos posted already

John2
  • By John2 · Posted March 18, 2014
  • 0 replies
  • From: John Novack, communications director, Inspire 3/18/14 Dear members, I'm writing to let you know that in a little more than a month, members here have posted more than 5,000 photos. Congratulations ...

The Inspire Q&A: Inspire talks with Don Dizon, MD

John2
  • By John2 · Posted March 14, 2014
  • 12 replies
  • The Inspire Q&A: Inspire talks with Don Dizon, MD Dear members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people who are making contributions to helping patients ...

worried by my grandaughter's headache's

c15
  • By c15 · Posted March 7, 2014
  • 20 replies
  • hi just wanted some feedback if possible, I have v-h-l, unfortunately so does my daughter & granddaughter, my granddaughter is 16, for some time now she has been having horrendous headache's, we know ...

VHL update of my son

Gregg1022
  • By Gregg1022 · Posted March 5, 2014
  • 0 replies
  • This is an update. 3/4/14 I found a home for my son to be treated and monitored at UVA in Virginia. We live in NJ about 5hrs away. We followed Dr. Asthagiri from NIH. My son had spinal cord surgery July ...

Ilene Sussman on Powerful Patient

joyceg98
  • By joyceg98 · Posted February 27, 2014
  • 1 reply
  • Mike and I spoke today with Ilene Sussman, Executive Director of the VHL Alliance, about the Rare Disease Day celebration being co-sponsored by VHLA and MassBio at the Massachusetts State House. Please ...

Moved to Iowa - looking for support group

johnda
  • By johnda · Posted February 21, 2014
  • 2 replies
  • If there is a support group for VHL my family would be interested - thank you ...

"A rare cancer survivor’s journey to thriving and advocating"

John2
  • By John2 · Posted February 12, 2014
  • 0 replies
  • From: John Novack, Communications Director, Inspire 2/12/14 Dear members, I am writing to share with you a new guest column in "Scope," the Stanford University School of Medicine's medical blog, "A rare ...

Introducing Photos for Inspire

Walter
  • By Walter · Posted February 11, 2014
  • 180 replies
  • Hello everyone, Today at Inspire we’re excited to announce the launch of a new feature, and it’s one that many of you have requested -- the ability to upload photos to Inspire. You can now add photos ...

Thank you

StevieH1970
  • By StevieH1970 · Posted February 8, 2014
  • 6 replies
  • I would like to thank you all for the support you have given me in what has been a dark bleak week for me, I am overwhelmed by the genuine concern shown to me by relative strangers, whilst I don't know ...

No adrenals,DHEA

juivi
  • By juivi · Posted February 7, 2014
  • 2 replies
  • Hi,I have no adrenals.I am wondering do I need DHEA?Is there anyone who is useing it and are you getting help?I also have liver metastases and I use afinitor.Is this hormone good for us ...

The pointless merry go round that is VHL.

StevieH1970
  • By StevieH1970 · Posted February 2, 2014
  • 30 replies
  • As you can gather from the title, I'm not having the time of my life. My name is Steve I'm 43 and unfortunately I have been feeling the affects of VHL for over 33 years now, just to bore you with the ...

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