Dear POEMS Friends,
Re: Poems Syndrome (Osteosclerotic Myeloma)
Enclosed is the updated profile of POEMS people from around the world. This profile contains 103 patients representing 17 countries and 32 states in the USA. The states with the most POEMS patients are CA (13), NJ (8) and NY (7). Of the 102 patients, 55 have had a Stem Cell Transplant (SCT) or 54% of the population sampled. In this day and age, most POEMS candidates receive a SCT as a standard treatment and a possible cure. The SCT procedure is not for everyone depending on a number of factors. Many of the patients have directly or indirectly worked with Dr. Angela Dispenzieri of the Mayo Clinic in Rochester, MN and this site is dedicated to Dr. Dispenzieri for her efforts in keeping us here today. In addition, this site is also dedicated to those brave individuals who courageously fought the hard battle, but are not here today. This website will take you to the profiles of all of the POEMS patients enrolled from around the world. I hope you enjoy the site as much as I enjoyed putting it together. The information contained in this website is based on your input, of which you authorized me to publish, based on my e-mail dated September 17, 2008 or thereafter.
If you have POEMS, please be sure to join us at Smart Patients, the new website for ACOR's POEMS group. To join, write an e-mail to firstname.lastname@example.org with the following message in the subject line: ATTN ROBIN POEMS. Robin will send you an activation e-mail along with instructions.
As part of the POEMS group at smartpatients.com, you can communicate with patients from around the world, exchange questions and information, and share emotional support. As a group, we probably know more about POEMS than a lot of medical professionals. We can help you and you can help us, so please join today. Find out everything you ever wanted to know about POEMS and the people around the world that have this very rare illness.Be sure and go to the profiles and see the folks around the world that have POEMS. One of them might be in your neighborhood. In 2001, I located my first person after three years of searching. That person knew of two others and from that point forward, I was determined to find as many POEMS patients as possible. Since setting up the website, I have found or should I say, you have found me, a total of 98 patients. How many more are out there that haven't been diagnosed yet? Or worse yet, have been mis-diagnosed which means they have been mis-treated. The common patient has been mis-diagnosed and mis-treated for a long period. You cannot get potentially cured of POEMS without proper treatment. As complicated as this disease is, it is treatable but you need an experienced doctor and that is a problem because there are so few POEMS patients very few doctors have ever treated it. Many doctors have never even heard of the illness. A good starting point would be to read this website.
Below the heading above (top of page), POEMS Syndrome, you may click on Welcome, About Me, Profile by Location, etc... which is in the green areas. These will take you to the specific areas of this website. Your comments as a POEMS patient or "just a reader" are welcomed and appreciated.
Special feature in the coming weeks, "Harry Ide's Page". When it is ready it will be announced through Smart Patients.
Alan Suher in CT (USA)