Re: POEMS Syndrome (Osteosclerotic Myeloma)
Dear POEMS Friends,
Below the title "POEMS Syndrome Info" in the green area above, you may click on Welcome, About Me, Profile by Location & Alpha, etc. These links will take you to the specific areas of this website.
Profile by Location and Alpha will take you to the profiles of all of the POEMS patients enrolled from around the world. To add or update your profile information, follow the instructions on that page. The information contained in this website is based on your input which you authorize me to publish. I hope you enjoy the site as much as I enjoyed putting it together.
The profile currently contains 122 patients representing 19 countries and 34 states in the USA. The states with the most POEMS patients are CA (13), NJ (8), and NY (7). We also have 15 POEMS folks in the UK and scatter patients around the world including in Zurrieq Malta (island in Mediteranean Sea). Of the 122 patients, 61 have had a stem cell transplant (SCT), representing 50% of the population sampled. In this day and age, most POEMS candidates receive a SCT as 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. 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.
If you have POEMS, please be sure to join us at Smart Patients, the new website for ACOR's POEMS group. To join, go to https://www.smartpatients.com/poems and click on "Join the conversation."
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 a total of 122 patients - or should I say, you have found me.
How many more are out there that haven't been diagnosed yet? Or worse yet, have been misdiagnosed which means they have been treated incorrectly. The typical patient is misdiagnosed and treated incorrectly for a long period. You cannot be 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 that 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.
Your comments as a POEMS patient or "just a reader" are welcomed and appreciated. Do you have something you would like publish? Just e-mail me your article; it may help other POEMS patients.
- Alan Suher in Connecticut, USA