Welcome Letter
Dear POEMS Friends, Re: Poems Syndrome (Osteosclerotic Myeloma) Enclosed is the updated profile of POEMS people from around the world. This profile contains 71 patients representing 12 countries. Of the 70 patients, 46 have had a Stem Cell Transplant (SCT) or 66% 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, 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. The link will take you to the profile. I hope you enjoy the site as much as my enjoyment in 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. Please be sure and sign up for ACOR.ORG http://listserv.acor.org/archives/poems.html From there, you can join the group and communicate with everyone. Find out everything you ever wanted to know about POEMS and the people around the world that have this very rare illness. The Mayo Clinic Renewal - Summer 2008 has a lead article about Lisa Laury, the TV news anchorwoman from Philadelphia. Lisa was on the Oprah Winfrey show, with her POEMS story, and is the first celebrity known with POEMS. Her POEMS affected her vocal cords and prohibited her from being able to handle her TV position. The SCT worked for her and she is now back to work on a part time basis. Click on this link to download a PDF file with the complete newsletter including the article: www.mayoclinic.org/mcitems/mc5500-mc5599/mc5582-0708.pdf By the way, we are all celebrities known as the POEMS Friends of the World. Alan Suher in CT (USA)
