Active journals
- By Brian · New reply 12:44 pm
- 24 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 dizzybee · New reply November 21, 2008
- 10 replies
- I finally got an appt with a geneticist on 1/13. This is just a meeting to see if I need genetic testing, but at least it's a start ...
- By dizzybee · New reply November 19, 2008
- 6 replies
- Has anyone had a PET & CT with contrast and radioactive tracer and felt sick afterwards? I had one done on 10/24 and every since then I've been very weak, nauseous and just don't feel well. I thought ...
- By Brian · New reply November 16, 2008
- 124 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 ...
- By Rick · New reply November 14, 2008
- 5 replies
- Just wantedd to share this. I found two hospitals in NY that have performed SRS on spinal tumors. Westchester Medical Center, Valhalla, NY and Mount Sinai Medical Center, NY,NY. I do not beleive they ...
- By dizzybee · New reply November 14, 2008
- 8 replies
- to all of you with your words of encouragement, advice, ideas, etc. Thanks to Gail at VHL for calling people for me. Hopefully, (fingers crossed) I will going to a genetics counselor at Shands in Gainesville ...
- By dizzybee · New reply November 11, 2008
- 3 replies
- I am a 45 yo white female, my mother was almost 35 when I was born and she smoked throughout her pregnancy. My brother had mumps and german measles, which my mother exposed me to, but I never got. I had ...
- By dizzybee · New reply November 11, 2008
- 5 replies
- As you may have read, I have dysautonomia which is a dysfunction of your autonomic system (everything in your body that works without you thinking about it, brain, heart, breathing, bp, bowels, kidneys ...
- By AlexAnderson · New reply November 5, 2008
- 14 replies
- Hey, Alex Jay Anderson here! You know me as Cancerkid777. Those of you reading this, I need your help. As you read this, a great thing is in the making. Alex Jay VHL Day!!! Now, I don't know the details ...
- By Jankster · New reply November 5, 2008
- 18 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 ...
- By StillKickin · New reply November 4, 2008
- 5 replies
- Thanks for the past support during my multiple surgeries, but I’m asking again for your best wishes and priers. Mostly for my fiancé. To give her the strength to deal with this again for the fourth time ...
- By joyceg98 · New reply November 2, 2008
- 3 replies
- I am sad to report that Dr. Andrew Novick died last weekend. Dr. Novick was a member of the Medical Advisory Board of the VHLFA, and a world-renowned urological surgeon. He pioneered partial nephrectomy ...
- By Crazydog · New reply October 25, 2008
- 4 replies
- My son is on holiday at the moment and has been scuba diving. He ended up with a burst ear drum (he has had problems with his right ear) but he also had awful pain in his neck and head. He at present ...
- By RosemarieB · New reply October 18, 2008
- 2 replies
- While sitting at home, recovering from surgery, I keep wondering why no one has come up with a man made protein that persons with VHL can take. They know the gene that produces the tumor suppressing protein ...
- By AlexAnderson · New reply October 7, 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 jmathison · New reply September 29, 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 Muriel · Posted 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 · Posted 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 · New reply September 18, 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 · Posted 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 ...
