Stickler Involved People

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 8^th 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 Aide

1) 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/

http://www.pediatricnetwork.org/ has the latest pediatric research, conferences, and resources; a Forum, a Question and Answer Forum and more

PAIN MANAGEMENT: QUESTIONS TO ASK

Review the following 'Questions To Ask' about pain management so you're prepared to discuss this important health issue with your health care professional.

1. What may be causing my pain symptoms?

2. Can my pain be successfully treated? What should I expect?

3. How long will my pain and treatment last?

4. What medications will I need to take and are there any side effects from these medications?

5. How might they affect the medications I am currently taking?

6. Is the condition that is causing my pain hereditary?

7. Is there anything else besides taking medication that I can do to help relieve my pain?

8. What should I do if additional pain, symptoms or problems occur?

9. Could my pain be a symptom of another illness? If so, what?

10. Will my pain get worse with age?

11. Do my symptoms, illness or progress need to be monitored in any way?
http://www.ivillagehealth.com/library/nwh/content/0,,215912_227275,00.html

WWW.STICKLERS.ORG has the 2004 conference and scholarship applications!!!!

How to live with lack of diagnosis

“There are many reasons why having a diagnosis is important to us, and a few reasons why it can become too important. Sometimes, despite everyone's best efforts, though, there just is not a clear 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."