Journals
- 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 ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
