definition and info
ways to cope
NEWS & UPDATES
Stickler Involved People Newsletter
Volume 6, Number 1 - March 2001
I am getting VERY excited about going to Canada for the SIP conference this year. I have never been that far north and we plan to travel a bit while there. I know all the work Barb has been doing to get our speakers and all the other planning that it takes for a conference. She deserves a big THANKS and each of you deserve to join us for this great event. I hope to see you in July.
Barb Lockey is HARD at work making plans for the conference in Montreal. She has booked the Holiday Inn Pointe-Claire http://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. The registration deadline will be June 1. See attached conference form.
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!!
Yearly, SIP asks for each family to contribute $10, to help cover postage and printing. We send a packet of material to each new member and to many medical personnel each month and every project has a cost. If you do not feel you are getting that much value from SIP, please contact us to be removed from our list. If you know a good value, send your contribution TODAY..
INTRODUCING A SIP
My son Jeremiah
(16 yr old) had surgery on his eyes twice for strabismus (as a baby), and he
now has exotropia -- he subconsciously alternates which eye he 'sees' through
and the other one strays outward. Another surgery might correct it, but the
success rate is only 50 %, and Jeremiah has adapted well, so we chose not to do
it - at least not yet.
A year ago, about 30 of you chose to send data to Beth. That information is now ready for distribution within our group. If you have email, contact firstname.lastname@example.org We will forward a LONG email. If you do not have email, send $5 to SIP, at the above address.
Thanks, Beth, for a great job!
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 or if you know of a group for him to check out, please email email@example.com
FROM THE LIST SERVER
“You reminded me of the first time my son had a shot, without four people
holding him down (and he was 7). He looked at me and said, "it hurts less,
if you do not panic." I always think that might apply to other parts of
“I told a new doctor that I had a hereditary genetic connective tissue
disorder, instead of throwing the term Stickler syndrome at him.
“Life by the yard is hard; life by the inch is a cinch." Source is a GREAT philosopher on the list server.
Sip received an announcement of a new government website to promote employment of adults with disabilities. It is www.disAbility.gov and features include “for job seekers”, “for employers”, “for families”, “for media” and “for you”. Check it out.
Bill found this website and it lets you interact and have a visual of
your eye problem to hand a doctor. He
Here are two other sources with an excellent genetics glossary:
The Kanter Family Foundation
www.icanonline.net is another recommendation of a member.
All of the other Stickler groups in the world are referenced on www.sticklers.org This is Stickler Involved People’s official website. It has valuable references to other websites and contains back copies of newsletters.
Dealing with Pain
“Although I long ago shifted some of the Super Mom tasks to my hubby, I still take on as much as I think I reasonably can. The hard part is that the Super Mom plans are usually made early in the day, when the pain meds are most effective and activity hasn’t yet challenged their effectiveness. I never know when I’ll really be able to handle it and when I won’t, so I tend to assume I’ll be OK. (I find that wishful thinking gets me a lot further most days than always assuming the worst.) Plus, I’ve learned the benefits of distraction and ignoring pain as a valuable part of my pain management program.
The downside of this is that the pain can then rise to an intolerable level that even distraction and ignoring the problem can’t avoid before I am really aware that it is building beyond the usual level. I ask for help when I can, but it’s not always easy for others to alter their plans at the last minute when I suddenly realize that my pain is out of control. When that happens, I just push on and try to do better next time at estimating what I can and cannot do, realizing that the cost of pushing on is that the next day or two I’ll have to cut way back on my activity and temporarily increase my meds.”
JUNE 8-10, 2001: PEOPLE'S GENOME CELEBRATION WEEKEND: