Coordinator Comment
Recently, I spent some quality time with a man, on the phone, who was worried about his best friend. The friend has had Stickler syndrome “for many years” and has become weary of making health care appointments. Mike is trying to gather all the knowledge he can, to help and encourage his friend. We discussed many problems and possible solutions. Then, Mike said, “He is such a great guy and I wish he never had Stickler syndrome.”
I told him that reminded me of my grandmother saying she wished she had never gotten married. Even as a child, I knew that meant that my dad would have not been born nor would I have been here. I assured Mike that part of what made his friend a great guy is the fact that he has Stickler syndrome. After the shock, he decided they should come meet some more of us GREAT GUYS in Chicago this summer. I truly hope that you will be able to join us!
Conference 2004
We will have our 8th Annual American Stickler syndrome conference in the Chicago area, JULY 9-11, 2004. We have selected the Doubletree Club Hotel at O‘Hare. Our selection of great speakers has been aided by Marcia Phillips, RN, DNSc of Rush University and by a member of SIP, who has found a counselor who will spend some time with the teens at the conference, as well as speak with the conference. This was a special suggestion from the 2003 conference.
More News about 2004 Conference
One of our members, J J Jackson, will be present to autograph his newly published book. JJ has been a friend of Stevie Wonder, for a long time and was asked to write Stevie’s biography. It will be in print in time for this year’s conference and we will have an exciting extra for our conference. JJ shared this information with us, as well as some photos of him with Stevie, at our San Jose conference last year..
INTRODUCING A SIP
My daughter is 4 years old and was tested for Sticklers Syndrome. The test
came back not, but they are redoing the test because it is wrong. With all the
problems she has doctors are sure it points to Stickler syndrome. Any way I'm
concerned with her
legs. She is very loose jointed and just walking there are times she falls
over her
own feet because her knees knock. Shriner’s Hospital is following her but have
not decided on braces or anything. You must know what I mean. People that deal
with the problems first hand are not the people that treat the problem and
then get to return to
the normal health life, no worries.
You were asking about other problems. She has the knock knees and is near
sighted. At the last appointment , the doctor said her retinas look fine, but
he wants to watch her close.
She was born with Pierre Robin, had the small jaw. She had a trach to keep her
airway clear and they removed it about a year ago. She had a soft cleft
palate. It was repaired once but there is still a little
hole. Also she has the high pitch hearing loss. So you see all the problems
point to Sticklers but the scary part is we had a second child a year ago. She
is normal from what our eyes can see; what’s hidden inside is what we want to
know. Then we also have a third child who will soon be a year old. She has
same problems as Megan so far hearing only the low tone, small jaw (not as bad
she didn’t need the trach), the soft and hard cleft. Because of that she can’t
eat. It goes into the lungs ,so she has a G- tube. Its a little easier care
for her but still spooky with what the future will hold for the girls. That’s
why I need to find out all the info that I can now. We need information, not
only if we decide to have another child, but for the children if they decide
to have children what they will be looking at. At least then I can have a
little more information for them, not like my husband and I not knowing. Well
it’s nice to know there are others out there.
ANNOUNCEMENT
Dr. and Mrs. Stickler have generously donated the start-up money for a fund to provide high school seniors, who have a diagnosis of Stickler syndrome, with a four year scholarship. A committee has completed the hurtles for the IRS and has the program going. This fund is now available for your tax deductible contributions!! You can make donations in honor of parents, your child, or your spouse. Applications are now available for graduating seniors, on our website. Deadline is June 15.
Conference Financial Aide1)
Often a case worker can find funding for a parent to attend an educational conference locally. 2) See www.patienttravel.org for financial help with airfare for the conference, or call 1-800-296-1217. 3) SIP has a small fund to assist with hotel rental and registration fees. Please contact sip@stickler.org for further information or application form.Contributions Recognized
For our first several years, we listed names of persons who contributed financially to Stickler Involved People. Then, for several years, we did not. A decision has been made to start listing contributors again.
An anonymous donation was made to help persons needing financial assistance to attend the Chicago conference.Internet Sites of Interest http://www.cleftline.org/news/bears.htm, to order Teddy Bears with Cleft repair stitches
For help with health conditions:
http://medlineplus.gov/
PAIN MANAGEMENT: QUESTIONS TO ASK
How to live with lack of diagnosis
What then? Here are a few suggestions.
1. Acknowledge that the medical community does not at present have a solution
for you, and seek solutions in some other form. This may involve life style
changes, getting support from friends or family, focusing more on adapting to
the condition than on curing it, working with healers outside the orthodox
medical system, or just deciding to get on with life as it is. The Ten
Resolutions are a recipe for this work. And don't think that this is somehow
an unusual situation.
2. Be clear within yourself that your symptoms are real, even if they don't
have a name. Don't be bullied by others who in well meaning words or in
judgment invalidate you. Study your symptoms, see what affects them for good
or ill. As you learn about them from experience, you will learn better how to
manage them and how to manage your life.
3. Figure out what it is that you are most afraid of - what are the fears that
a diagnosis would put to rest? See if these fears can be allayed in other
ways. Maybe you already have some of the information you need to answer your
questions and decrease your fears. Also look carefully at the things you are
concerned about or afraid of, and see if the fears are realistic. Maybe you
already have solutions for some of the problems that you think you might have
to face.
4. Find ways to get on with your life in as many ways as possible, and do not
let the uncertainty stop you from making whatever plans you are able to. Even
a clear diagnosis would not confer 100% certainty what will befall you in
future. Be prepared to be flexible and make changes as you go, but do not let
uncertainty stop you from living your life.
5. Do whatever you can to make your body feel good, to minimize symptoms, and
to maintain your body - for example, eating nutritious food, reducing stress,
exercising, getting enough sleep. You need to do your part to make the body's
condition optimal for healing. Once you are doing this, let it go,
acknowledging that you are doing all you can and that the rest is up to
nature.
6. It is appropriate to be reassessed from time to time, to be sure that
nothing new has developed. Discuss this with your physician.
by Brian Grady, PhD.
www.tenresolutions.org.
Used by permission."
WWW.STICKLERS.ORG has the 2004 conference applications!!!!