Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Active journals
Thanks to all who all
- By kimcruz6 · New reply April 19, 2009
- 1 reply
- Just wanted to Thank everyone who responded to my journal She is getting medicaid I hounded and harassed senators and legislators enough the reviewed her case and gave it to her.But thank you all for ...
Radio Show - Finding your Philosophy of Care
- By joyceg98 · Posted April 15, 2009
- 0 replies
- Kim Kubilus from National Tay Sachs & Allied Diseases (NTSAD) will speak with Joyce Graff about, "Finding Your Philosophy of Care." Also hear the personal stories of finding a care path from 5 mothers ...
New feature - profile completeness gauge
- By Tasha · New reply April 14, 2009
- 14 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 ...
Radio show - managing pain
- By joyceg98 · Posted April 8, 2009
- 0 replies
- Yvette Colón of the National Pain Foundation will be on the phone and internet with Joyce Graff Thursday April 9 at 3 pm Eastern time to talk about managing pain. You are welcome to join the call! Ask ...
VHL versus vHL? What's in a name?
- By joyceg98 · Posted April 8, 2009
- 0 replies
- VHL stands for von Hippel-Lindau Syndrome. It is named for two European doctors whose early descriptions helped to identify and characterize this syndrome. Perhaps you have seen the acronym spelled variously ...
Radiology Benefits Management
- By joyceg98 · Posted April 8, 2009
- 0 replies
- I would like to hear from people who have experienced issues with Radiology Benefits Management (RBM), either pro or con. How is this making life easier or more difficult for you as a patient? If you ...
Lung lesions in vHL
- By TinaDiane · New reply April 8, 2009
- 4 replies
- To all, I don't know if you remember me or not, but several months ago I asked question if any of you have had wierd things show up on your lungs. Many of you were great to respond. I just wanted to let ...
Who would have ever thought it was VHL!
- By alyssa06 · New reply April 5, 2009
- 2 replies
- My name is Tara and I'm 27 years old. When I was 15 I was diagnosed with my first pheo. It took them a while to diagnose me of coarse and I was very ill by that time. They removed an 8x8 pheo. My second ...
pancreatic or neuroendocryne
- By raymy · New reply April 5, 2009
- 15 replies
- can anyone give me advice i was diagnosed with metastatic pancreatic cancer in july 2005 and given months to live my tumour was 4cm i trial m200 and gemcetibine every moncay for 1 year still worked due ...
Talk with us about creating a rare disease organization from scratch
- By joyceg98 · Posted April 1, 2009
- 0 replies
- Thursday (tomorrow), at 3 pm Eastern US time, Cathy Sherman, the head of the BHD Family Alliance, will be on the Powerful Patient. Cathy is one of the moderators of the Kidney Oncology listserv. She is ...
Resulting "Quadriplegia"
- By dani · New reply March 28, 2009
- 3 replies
- As my previous post stated, I had surgery just days before I would have died--with a massive spinal tumor from c-2 to c-7. I woke up from surgery unable to move anything except my right arm which I beat ...
Brain Stem Surgery
- By christytaylor · New reply March 28, 2009
- 4 replies
- Has anyone had brain surgery done at anytie and eperienced loss of usage like with your hand or hands being numb or to where you can't use your body part ? I was justwondering, ecause back this past July ...
Amyloidosis Support Groups and Cool Hot Smooth Jazz
- By Muriel · Posted March 27, 2009
- 0 replies
- From Richard Harris I have just received the first formal review by a noted jazz critic of my new CD, which I am posting on my website (www.RichardHarrisLive.com) today. I thought you might be interested ...
Denied Insurance?
- By joyceg98 · New reply March 24, 2009
- 9 replies
- Hopefully you have good insurance and are finding the health care you need. If not, how difficult has it been to get insurance? I would appreciate your sharing some stories with me. Would it be a good ...
Improving Patient Care - Mary Andrus
- By joyceg98 · New reply March 24, 2009
- 2 replies
- I have a delightful guest lined up for the Powerful Patient this week. Mary Andrus from Easter Seals will join me to talk about the health care implications of the Recovery Act: comparative effectiveness ...
Spinal Tumors
- By momacookie · New reply March 23, 2009
- 5 replies
- I'm getting ready t have surgery to remove s very large tumor in c6 and c7 of the pinal cord which is just below the neck . Because of the size I'm hopeing there wont be very much problem afterwards ...
Blogging about Obama & Embryonic Stem Cell Research
- By Annette1 · New reply March 23, 2009
- 2 replies
- I blog for a women's health website, empowHer.com. My article has caused some controversy but I remain firmly convinced that lifting the ban on funding will bring us closer to a cure. See what you think ...
Coping with Change
- By MariaKaminski · Posted March 16, 2009
- 0 replies
- We all have ups and downs in life. Hopefully, you have more ups than downs. If you feel your down times are what you have more of, then maybe you need to re examine things. You may be looking at things ...
Advances in kidney transplantation
- By joyceg98 · New reply March 11, 2009
- 1 reply
- Dr. David Sachs will join me on the Powerful Patient this coming Thursday, March 12, at 3-4 pm Eastern US time. Dr. Sachs and his colleagues have developed a method of "training" the recipient's body ...
Ready for an Emergency
- By joyceg98 · New reply March 6, 2009
- 2 replies
- On Thursday's radio show at the Powerful Patient we will speak with Elaine Lasoff, Director of Education for the Needham (Massachusetts) Emergency Management Association. Elaine is a nurse who specializes ...
