December 2001
Coordinator Comment
If you have a good memory, you know that I wrote about losing a font in the September newsletter. Since then, I believe that the world has lost so much more, it makes me feel trivial. For each newsletter before this one, I have done this right after I finished folding and stuffing. So, I was on a positive note. I did not do that in September. I know that so many words and feelings have been written about the tragedy, I could not add to all the great thoughts. I just ask that you hold someone dear to you close to you.
‘Put some thought into what the holidays mean for you, and what you want them to be.’ – HERB RAPPAPORT clinical psychologist at Temple University
RESOURCES
All of the other Stickler support groups in the world are referenced on www.sticklers.org
“We all have a tendency to obscure the forest of simple joys with the trees of problems.” -Christiane Collange SAVE SIP SIP was spending over $200 a quarter for printing and postage. We estimate that over 1/2 of you have email and can receive this newsletter on line. We need your assistance with this simple task. If you have sent your email address, a BIG THANKS. If not, and you have an email address, PLEASE send it TODAY to: sip@sticklers.org This will be our final request, so you will get no more reminders. Please help us.
Stickler – The Elusive Syndrome
This book, written by Wendy Hughes, explains, in layman terms, the con di tion, possible medical prob lems, and how it can affect individuals. The approach is positive and leaves the reader with hope and skills to manage Stickler syndrome.
Wendy’s book is available for $28.50 payable to Stickler Involved People. The cost includes exchange to British pounds, shipping and handling. Send requests to: Stickler Involved Peo ple, 15 Angelina, Augusta, KS 67010 INTRODUCING A SIP It’s been wonderful to find a bunch of people going through similar experiences and know that we are not alone. My Mum was diagnosed with arthritis when she was 12 years and her sight has continued to deteriorate over the years despite many operations to save the retina detaching. She also has various skeletal abnormalities. I also have had 2 operations to save my sight. My 14 year old son was diagnosed with Perthes disease when he was 6 years and has had operations to help him walk. He copes very well with the pain -even though some times it does threaten to over-whelm him. He also has hearing loss and short (near) sightedness. My daughter was born with Pierre Robin (cleft palate and facial abnormalities) and she also has signs of deterioration at the back of her eyes. I have a cousin who lost his sight in one eye when he was 9 years old and another also born with Pierre Robin (his first child also born with the it). It seems no one has been left completely free from this syndrome and I do worry for any future grandchildren. But, I am so excited about medical developments and it is heartening to know that there is great support from others also suffering. Life is wonderful!! Donna CONFERENCE 2002 We will be moving the conference next year to Baltimore, June 14-16. Dr Francomono will be offering a clinic on Friday, for those who are not in the NIH study.