Volume 3, Number 4 – December 1998
Coordinator Comment
This has been a very busy season for us personally and for Stickler Involved People. The questionnaires are out to you and you need to return yours TODAY, if you have not taken care of this. We are making history with this survey. Exciting news about other Stickler syndrome studies and theories have the air electric in our house (and the fact that our daughter’s favorite music group is coming to town in April has sure helped the excitement). We want to take this opportunity to wish each of you all the best for the holidays and in the New Year!!
NMF CONFERENCE
The National Marfan Foundation annual conference will be July 7-10, at Center for Genetics, Allegheny University, Allegheny General Hospital, Pittsburgh and the Pittsburgh Marriott, City Center. For more information, contact NMF at 382 Main Street, Port Washington, NY 11050 or call 516-883-8712. NMF is a partner with SIP in the Coalition of Heritable Connective Tissue Disorders.
NIH STUDY Status
Joie had been working fast and furious to get scheduling and doctor records in order for all of us who have volunteered to participate in the National Institutes of Health’s 5 year study of 3 connective tissue disorders. Exciting things have come out of this study already. Dr Wilkin and his team have established a physical criteria for the diagnosis of Stickler syndrome. Also, they are certain that fibromyalgia should be considered as a possible manifestation of Stickler syndrome.. If you want to volunteer for the NIH study, contact Stickler Involved People.
NEW BOOK
There is a new book from the Arthritis Foundation called Raising a Child with Arthritis. It sells through the Foundation (1-800-207-8533) for $14.95. Some of the topics include: why the dentist needs to know about your child’s arthritis, which activities help – or hurt, helping choose a career path for your child, 8 tips to get through the school day, helping your child choose a college, 14 ways to help your child stick to the treatment plan., etc. The book comes highly recommended by Jan Helfer.
REMEMBER
DENVER COLORADO is the place to be for the 1999 Stickler Conference. Rick, Randy and Sheri Bishop will be hosting us. June 11-13, 1999, at the Marriott TechCenter. Rooms will be $59 a night, conference rate. Call 1-800-228-9290 and tell them you are with Stickler Involved People. The hotel’s reservation deadline is May 13 & conference registration deadline will be the same day.
There are both indoor and outdoor pools, a sauna, Jacuzzi, and exercise room. The room price was just reduced and now includes breakfast on Saturday and Sunday. This is an exceptional value for each of you who are able to attend the conference next year. Please set this time aside to join us. We have carefully considered all the evaluation forms and incorporated ideas that will work for next year. Also, we will be doing more panels with doctors and , therefore, more small group discussion time. We also are working on a “select one of the following” format, for special interest situations.
Bennett’s Bar B Que will be the location for our Saturday Nite Event. Those who wish may order from the menu which varies from $7.00 to $16.00. The chuck wagon style buffet will be available for adults at $16 and kids at $8. The buffet will consist of barbecue beef, ribs, chicken and pork, with beans, cole slaw, potato salad and Texas toast (subject to change). Please be prepared to include this cost with your registration fee for the conference. The registration forms will be in the March newsletter.
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.
It 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
The following article was submitted by a guest “reporter”. Peter Baylies is the editor of a newsletter for dads who get to stay at home. He can be reached at athomedad@aol.com
A big THANKS to Peter:
A Bionic Eye for Sticklers?
An ABC Nightly News report by Jack Smith on Nov. 5th, 1998 noted that vision can be “restored by creating an electrical induced prosthesis that is placed into the eye. An artificial retina, which uses a microchip etched with thousands of solar cells to gather light, could eventually help blind people see again.”
“We can restore vision by creating an electrical induced prosthesis to place into the eye,” says pediatric ophthalmologist and inventor Dr. Alan Chow, whose company is working on creating this “bionic eye.”
The Chows have tested their chip in blind animals and successfully produced visual sensations. To date, the chip will work in the eye for only a limited period of time, but development continues and tests in human eyes are anticipated within two years.
Making these retinal replacements is difficult. Researchers have created microchips just 3 millimeters across that house 4,000 to 5000 microscopic solar cells. When the chip is implanted into the back of the eye and light strikes those solar cells, the light is converted into electrical signals that travel through the optic nerve to the brain and are interpreted as an image.
Although these implants are targeted toward people with retinal diseases such as macular degeneration and Retinitis Pigmentosa, one member of the Sticklers List Server noted, “It may be more relevant than you think, as someone with Retinitis Pigmentosa assured me that Stickler’s belonged in with RP, and my eye doctor said that was right.”
Again, The dates for the Third Annual American Stickler Conference are June 11-13, 1999 at the Denver Marriott-Tech Center. PLAN NOW to join us then.
What we have done
SIP reached #300 on our database, in October, and now stands at 310. The new booklet: “Helpful Hints for living with Stickler syndrome” will be available soon. SIP received a small grant from the Mellon PSBS. We received our first company matched donation. Our new slate of officers has been very busy. The Quex has been mailed and the returned ones are being digested.
Christmas Gift Idea
Melissa Ratchford is 17 years old and just had her first book of poetry published. The book is called “Poetry From The Soul”. The poems were written from life experiences, good and bad, as a person living with Stickler Syndrome. She have vision, hearing and joint involvement with Sticklers and has the Stickler Syndrome look. She was teased a lot at school. She felt like she had no one to talk to, so would write until she felt better about whatever was bothering her. It helped to heal her and can help you. The books cost $5.00 American. One dollar from every book sold to SIP members will be given to the Canadian branch of SIP. If you are interested write her:
Melissa Ratchford
14 Wade Street
Kentville, N.S.
B4N 1B6
or e-mail : rtchford@glinx.com
TIDBITS FROM the LIST SERVER
A speech therapist raised this issue “low muscle tone is typical of Stickler syndrome and the lack of strength and control, even in the muscles in mouths, may be making it hard to make the sounds they need.”
The ENT, at the conference in July, said that persons with Stickler syndrome may be missing the muscles to make the ears pop.
One person’s baby took an anti-inflammatory and the baby’s eye sight improved. The ophthalmologist and the rheumotologist are both intrigued about the possible connection -thinking that since eye muscles and surrounding area is connective tissue, perhaps an anti-inflammatory could have an impact.
A PT came through with this helpful method for handling stairs: “Put both feet on the same step and lead with the stronger leg going up and the weaker leg going down.” She feels this will help with hip pain and make the person more confident and secure.
For more information about the list server, click here.