June 24, 2011
My husband was diagnosed with Multiple Myeloma in 2009, at the age of 66. We knew nothing about the disease, but through research online found the IMRF and the amazing amount of information available not just from the medical and scientific community, for which we were hungry, but by which we were often confused; but most helpfully, patient chat boards and archives full of helpful suggestions and encouragement. Now there are updates, caregiver blogs, patient, nurse and physician blogs, all full of hopeful information for those of us living and loving those with MM. My husband has a great attitude. He had a successful SCT in 2010, and is in remission. A bout of double pneumonia a year later turned into kidney failure. His kidneys are back to 10% function. Thanks to the patients input, I know this isn't unusual.
The Great!
I've personally experienced the results of this organization in...
Reading about and hearing from long term survivors. It has been like drinking water after a desert journey to hear of new effective ways of treating MM.
Ways to make it better...
If I had to make changes to this organization, I would...
Encourage more local fund-raisers and Ira roll over type contributions from the rich and arrange a knighthood for our Jeopardy champ.
MY ROLE:
Client Served & I researched for my sick husband.