Coordinator Comment
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.
ConferenceNEWS
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.
SAVE SIP
If
you have an email address, PLEASE send it TODAY to: cya2000@aol.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!!
Annual Solicitation
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.
Jeremiah wore glasses from the time he was 6 months old until he was nine years
old. In the aftermath of hurricane Andrew (at that time we lived in the area
worst hit by the hurricane), he broke his glasses. The optical shop blew away
in the hurricane and the optician - Jeremiah's uncle - moved and
we didn't have the new address yet, so it wasn't easy to get the glasses
replaced. During the time before we could get another copy of his prescription
and find an undamaged optical shop to get new glasses made, Jeremiah's eyes
changed and he adapted to seeing without glasses. His eyes
were then worse with the new glasses than without them, so the ophthalmologist
said to stop wearing glasses altogether. His eyes still
stray a little, but he gone seven years now without glasses.
Jeremiah also had tendon releases in both legs - ankles, knees and hips -with a
partial obdurator neurectomy at age 5. It took two surgeons eight and a half
hours to do the surgery. The week before his surgery, I took care of a
40-year-old man (I am an RN) who had the same surgery as a young child. This man was left permanently frog-legged
and his legs literally shriveled up. I was scared to death that we had made the
wrong decision. I would have felt totally responsible if the surgery had not
gone well. At the time,
Jeremiah was in a preschool for disabled children and every child in his class
had similar surgery that year. He asked me how old I was when I had my leg
surgery. When I told him I had never had leg surgery, he exclaimed in
astonishment "But mommy, how did you every learn to walk if you didn't
have surgery!!"
Fortunately, Jeremiah got a far better result than the surgeon expected, and he
has been able to walk independently for short distances ever since the surgery.
By 5th grade, the leg braces broke so often the orthopedic surgeon decided he
must not need them anymore. Jeremiah still needs a wheelchair some of the time,
but he is doing very well. He has a part-time job at a
theme park and is a better worker than any of the other teens while still
maintaining good grades in school.
Jill Brown (mother of Jason and Jeremiah)
SIP Directory
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
sip@sticklers.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 sip@sticklers.org
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
life, also.”
“I often thought (and still sometimes do, in times of depression and
self-criticism) that I too am very lazy and just don't want to do the work that
needs doing. However, having read from all of you about fatigue and how hard it
is for all of us to do the most basic of chores really makes me feel like I'm
okay! Thanks”
“I told a new doctor that I had a hereditary genetic connective tissue
disorder, instead of throwing the term Stickler syndrome at him.
He was much more receptive, I suppose cuz he umderstood and was not intimidated
by something he had never heard of.
Instead of going on the defensive, he was concerned and helpful and
incorporated the info in to his diagnosis.
Later in the conversation I told him what this particular connective
tissue disorder was called. You may
want to try it with your new docs and see if it works.”
“Life by the yard is hard; life
by the inch is a cinch." Source
is a GREAT philosopher on the list server.
PRESS
RELEASE
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.
OTHER
WEBSITES
Bill found this website and it lets you interact and have a visual of
your eye problem to hand a doctor. He
loved that:
http://www.surgicaleyes.com/eyechart/eyechart.htm
Here are two other sources with an excellent genetics glossary:
the Nat. Human Genome Research Institute has their own "talking"
version web at:
http://www.nhgri.nih.gov/DIR/VIP/Glossary/index.html
and Gene Sage publishes excellent genetics articles online and they
do have a glossary in some of their articles. You can also email the editors
with any terms you'd like defined: www.genesage.com
The Kanter Family Foundation
a new Web site at www.healthlegacy.org .
This site explains how a database would be an easy-to use-tool to help patients
and health-care providers determine which treatments work best for specific
diseases
and conditions.
www.icanonline.net is another recommendation of a member.
RESOURCES
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:
www.geneticalliance.org