definition and info
ways to cope
NEWS & UPDATES
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!
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
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.
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 firstname.lastname@example.org for further information or application form.
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?
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.
WWW.STICKLERS.ORG has the 2004 conference applications!!!!