Journals

Amyloidosis Support Groups- Rheumatoid Arthritis

Muriel
  • By Muriel · September 25, 2008
  • 0 replies
  • Received this last night... It has taken five years to go from committee to an actual floor vote, but it is actually scheduled to be voted upon....this Thursday. This is critically important legislation ...

Cha Cha Cha Changes....

MariaKaminski
  • By MariaKaminski · September 23, 2008
  • 0 replies
  • Life happens, and life changes. Sometimes too quickly. Looking back I never thought I'd be in this place at this time with this life. But some things are good and some things are not so good, but everything ...

Life Ain't Always Beautiful...

MariaKaminski
  • By MariaKaminski · September 15, 2008
  • 2 replies
  • Oh is crying time again... Current mood: lonely Category: sad Life Life is hard. Who ever said it wasn't didn't really live. These days I take one step forward and two steps back. I'm slowly getting back ...

The Symposium was wonderful!

joyceg98
  • By joyceg98 · September 10, 2008
  • 0 replies
  • I just got back from the Eighth International Medical Symposium on Von Hippel-Lindau in Denmark. I have posted some early photos to share some of the excitement. The report will be going up in the next ...

Developing Asthma After Intubation

jmathison
  • By jmathison · September 10, 2008
  • 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 ...

Privacy and control

Brian
  • By Brian · August 27, 2008
  • 48 replies
  • At Inspire, we think about privacy all the time. Virtually every web site has a privacy policy; you can read ours here: http://www.inspire.com/about/privacy/. But simply following the letter of a privacy ...

Cancer since age 4

Cancerkid777
  • By Cancerkid777 · August 20, 2008
  • 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 ...

The Blog

Beverly2
  • By Beverly2 · August 9, 2008
  • 0 replies
  • I've been writing fairly often already about our journey with vhl. Go to http://stevensjourney.blogspot.com. It's all there ...

Two years ago today...

JennyBlue
  • By JennyBlue · July 29, 2008
  • 1 reply
  • I opened my eyes and saw a bright pink light. "What is that?" I thought, unwitting that I had said it aloud.... A voice, "What do you see, hon?" Who's voice was this? Do I know this voice? "Who are you ...

Blood Pressure

chewbacca1965
  • By chewbacca1965 · July 28, 2008
  • 4 replies
  • Just seen my family doctor the 23rd, and found out that my blood pressure is higher then it was 3 months ago. It didn't dawn on me till today that they might have missed something on my abdominal scan ...

Life with VHL

Frupper
  • By Frupper · July 27, 2008
  • 1 reply
  • 5 year ago my girlfrend had non-Hodgkin's Lymphoma. She was strong and she recovered after one year of chemotherapy. We tought that the worst is just behind us. But last year doctors found tumor in my ...

VHL Throax ?

magtwin2
  • By magtwin2 · July 19, 2008
  • 8 replies
  • I am a VHL Patient and have had several brain and eye, and Kidney surgeries for removal of tumors/cysts. I have had both kidneys removed and now on dialysis. I met with my transplant evaluation team during ...

This week's show - and VHLFA Orlando!

joyceg98
  • By joyceg98 · July 3, 2008
  • 0 replies
  • The guest on the Powerful Patient this week is a member of this support group. See if you can figure out who it is! It's a conversation about blogging, and the value of blogging in her life. The Orlando ...

New feature: video!

Brian
  • By Brian · June 28, 2008
  • 10 replies
  • I am pleased to announce that we have updated Inspire to support video. You can now share a video of yourself, videos that you find inspirational or informative, and more. I've included one of myself ...

Auditory Canal Tumor

Rick
  • By Rick · June 26, 2008
  • 0 replies
  • I have a tumor in my auditory canal. After several discussions with two different neurosurgeons both seperately and them together (one does conventional surgery only and one does both conventional and ...

Support your group and raise awareness with badges

Walter
  • By Walter · June 20, 2008
  • 30 replies
  • Hi everyone. We added a new feature today that you can use to support your groups and the organizations that sponsor them, and get the word out about the causes that are important to you. If you visit ...

New feature - profile completeness gauge

Tasha
  • By Tasha · June 12, 2008
  • 4 replies
  • Greetings from TeamInspire! I'm your friendly neighborhood designer, here to tell you about some new features. You might notice that today we revamped your member homepage - https://www.inspire.com/member-home.pl ...

Improvements to the message system are complete

Walter
  • By Walter · June 10, 2008
  • 14 replies
  • Hello everyone. Just a quick note to let you know that the improvements to the message system that I wrote about previously are complete. You can check them out now. You'll notice that we've grouped your ...

**Updated** System maintenance: Tuesday June 10th, 5 am - 7 am Eastern

Walter
  • By Walter · June 4, 2008
  • 1 reply
  • ** Updated ** Due to power outages caused by storms in the Washington, DC area, we need to postpone this maintenance until Tuesday June 10th, from 5 am to 7 am. Thanks for your patience. ** Updated ...

Chloe has VHL

Melbeth
  • By Melbeth · June 3, 2008
  • 8 replies
  • My husband and I just learned this past Friday that Chloe, our 6 year old daughter has the deletion of the VHL gene, as I do. As alarming as it may seem, we're all doing ok. She is an amazing kid and ...

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