definition and info
ways to cope
NEWS & UPDATES
Stickler Involved People Newsletter
Volume 5, Number 4 - December 2000
I wish you the best of Holiday seasons and suggest that each of us give ourselves a BIG HUG and try to slow down to enjoy life. We all seem to be pushed and pulled at this time of year. Give yourself a moment.
With that thought in mind, also give SIP a moment and send your e-mail address to: email@example.com
(See accompanying article on page#3)
NEW IDEA ??????
With Christmas coming, think of persons you NEVER can find the right gift for. Send SIP a donation for the scholarship fund, in their honor. Also, order Christmas presents through Igive.com
We do have some volunteers to start the conference scholarship project. Remember to use this website for all your on-line buys: IGIVE: http://www.Igive.com AND that it pays SIP money. So far, IGIVE has sent over $300 to SIP!!
If you don't already know about Medline Plus, check it out: http://medlineplus.gov It's a great source of health information for patients and others.
NEWS FOR 2001
Barb Lockey is HARD at work making plans for the conference in Montreal. She has booked the Holiday Inn Pointe-Claire www.holiday-inn.com/hotels/yulpc for July 6-8. 2001. Start your planning now and REMEMBER that the American $ goes a lot further in Canada!!!! You will have a great vacation and learn a lot at the same time. Barb will be using a lot of resources from her experiences with getting Tyler diagnosed.
HELPFUL HINTS BOOK
About a year ago, we requested that you send Nancy Barry your ideas for making life with Stickler syndrome easier. Nancy has worked so hard to collect the ideas in this book. It is indexed and is a super support tool. If you want a copy, send $5 to SIP at her address: 20 Sunset Ct, Fowler, IL 62338. Or e-mail her at: firstname.lastname@example.org
Also, Nancy hopes to put out a new edition when she gets enough ideas. So, send your hints for a future publication.
INTRODUCING A SIP
My name is Patty and I never knew that I had Sticklers until my youngest
child was diagnosed with a severe case of it. It was at this time that my
oldest son and I were also diagnosed with just mild cases of it. My youngest
child was 3 years old, and weighed only 36 pounds and would not eat for me. I
had to wait until he was 5 years old to repair which led to feeding
problems even today at the age of 11. My son was seen and was diagnosed with Sticklers in just a few hours. He had many
severe symptoms such as extreme myopia ( never detected until now), cleft
palate, mild to moderate hearing loss, and abnormalities throughout the entire
body including facial features, bones, fingers and toes. My son has learning
disabilities and even though he is in a normal classroom structure he has an
aid one on one in school with him and he gets special education. He is in the
fifth grade and is doing second and
If you have an email address, PLEASE send it TODAY to: email@example.com
SIP is 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. SIP thanks you, Pat and Bill thank you and their kids will love you, because they will have less envelopes to stuff!!
Stickler - The Elusive Syndrome
This book, written by Wendy Hughes, explains, in layman terms, the condition, possible medical problems, 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 People, 15 Angelina, Augusta, KS 67010
Excitement in the Air
Dr Stickler found clinics that he feels will work with Stickler syndrome patients. His research located clinics in New York City, WInston-Salem, Minneapolis, San Diego, Toronto, Ont, Omaha, Rochester and several doctor in Boston (but not a clinic). If you need further information, please email firstname.lastname@example.org
FROM THE LIST SERVER
“Nothing changed once we got the SS diagnosis but it helped me to be aware of how and why she has what she does and to be on the look out for future changes. I was also surprised that having the SS attached to her has opening some doors for referrals to specialists and within the school community. School knows very little about SS and go along with a lot of what I want because I sound so knowledgeable.(Thanks in part to this Listserver)”
“For the last couple of months, brushing my teeth caused me a lot of
wrist pain. I talked to my dentist, who suggested an electric toothbrush. He
recommended the lightest weight one available. It costs about $50 and I love
it! My husband does too (you can buy extra heads, so everyone in the family can
use it). It really gets my teeth clean, and it does all the work. All you have
to do is hold it for a few seconds on each tooth.”
At the Seattle conference, Dr
Stickler asked the genetic counselor about this issue and then determined to
find out more. Here is some of the
infomation: “Preimplantation genetic diagnosis (PGD) is the diagnosis of
genetic disease before the pregnancy has started by testing the embryos before
they enter the uterus (womb). Embryos are obtained by combining eggs and sperm
in the laboratory (In vitro fertilization). From each embryo, one or two cells
are removed and tested. If the embryo is judged to be free of the disease it
can be transferred to the uterus and hopefully develop into a healthy baby.”
“Keep up the good work. All of us who either have Sticklers or who
knows and loves someone with Sticklers need you and others like you in our
lives in whatever way you
Ideas Shared by Shannon
are proud to tell you that every month for over a year, there has been an
article by Michael Cermak Jr. in a national childrens magazine
"ContactKids". The following is this month’s copy:
a real difficult position I (we) have: not "handicapped-looking
enough" to be accepted as handicapped, and not "normal