Volume 6, Number 2 – June 2001
Coordinator Comment
This spring has been filled with some VERY good times, personally, and some pretty bad things, but that seems to be the way life is for all of us. There are moments, however, where it is hard to remember the good. Those
are the times I reflect on a past laugh or hug or greeting card, which I got or sent and that seems to get me up from the “pity pit” floor and on my way. I hope you have found something to be your “pick-me-up”. If not, today is a good day to look for the good. I truly hope to see you in Canada in July. That will be a GOOD time to always be remembered.
SAVE SIP
SIP was 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. If you have sent your email
address, a BIG THANKS. If not, and you have an email address, PLEASE send it TODAY to: sip@sticklers.org
Conference NEWS
Our deadline is HERE. 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. She has added the following speakers:
Orthopedist.: Dr. François Fassier; Genetics: Dr. Laura Russell;
Ophthalmologist: Dr. Robert Polomeno; and Sunday morning: AWISH(arthritis west island self help group) for pain relief, exercise, and dealing with arthritis and/or fibromyalgia. This year, we will spend small group time on topics you chose, from past conferences.
Contact:
Karen Olehy, Registrar
202 Circuit Court
East Peoria, IL 61611
TODAY and then contact the hotel at 1-800-375-2680 or www.holiday-inn.com/hotels/yulpc for July 6-8, 2001 in a suburb of Montreal, Canada. We hope to see you there. REMEMBER that the American & goes a lot further in Canada!!!!
(The conference brochure is on our website: www.sticklers.org)
SCHOLARSHIP
Some of you may remember that SIP asked for volunteers to form a conference scholarship committee. Those volunteers have been working hard and made a decision to collect more funds, before opening the application phase. For
now, PLEASE consider a donation to this worthy cause. There are those people who you never know what to give and we will send a GREAT “thank-you” note……… Also, all of our receipt from IGIVE are put into the scholarship fund. So, if you have wedding or graduation presents to buy, save yourself time and go to www.igive.com
HELPFUL HINTS BOOK
About a year ago, we requested that you send Nancy Barry your ideas for making life with Stickler syndrome easier. Nancy has worked hard to collect the ideas in this book. It is indexed and is a super support tool. If you want a copy, send $5 to SIP at her address: 2637 Sunset Court, Fowler, IL 62338. Or e-mail her at: nbarry@adams.net
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 Peo ple, 15 Angelina, Augusta, KS 67010. This book will be available at the Montreal Conference, where you can save
$3.50 shipping cost.
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
NIH NEWS
Those of you who are in the study received a letter from Dr Clair Francomono, explaining that the connective tissue study has been moved to Baltimore. This caused a delay of about 6 months in participants going to the NIH. Dr Francomono believes that all things will be up and running by July and participants will again start getting letters to come for follow-ups.
We owe a BIG THANK YOU to Ziggy (Joan Balog), for all her efforts over a long year.
We love you!!
Another Big THANKS
The March newsletter was folded and stuffed by a group of volunteers from the Butler County Department on Aging, right here in Augusta, Kansas and organized by Jane Dornbos. We truly appreciate their efforts more than any one can know, who has never done that job.
Charitable Medical Air
One of America’s best kept secrets is the existing charitable medical air transportation system. Its purpose is to ensure that no financially-needy patient is denied access to distant specialized evaluation, diagnosis or treatment for lack of funds to pay for long-distance travel. The system provided transportation either via the airlines (for longer trips) or via private aircraft flown by highly qualified FAA licensed volunteer pilots. During the year 2000, the system served in excess of 18,000 patients, plus family members.
Many charities are involved – but the largest and only “full service” system in the country is that of Angel Flight America. Access to this system is by calling the National Patient Travel HELPLINE at 1-800-296-1217. Internet assistance can be accessed at www.patienttravel.org. If you have dealings with this group, let us know.
FROM THE LIST SERVER
“Here are some activities that assist in developing handwriting skills (and would help strengthen grip):
- Pick up coins off the table and putting them in jars.
- Roll a ball of playdoh into a sphere. Place it on your open hand…..Push
- your thumb into the ball until you reach your palm.
- Buy all sizes of nuts and bolts. Have your children match them and practice putting the nut on and taking it off.
- Crumple pieces of paper into wads of paper. Then, the hard part! “Unscrunch” the ball back into a flat piece of paper.
- Buy a Garlic press specifically for Playdoh.
- Practice cutting paper and Fun Foam (available at craft stores) with scissors.
- When you are swimming with your child, have them “write” letters on your back and your job is to guess what they have written. Then you get to do it on theirs!”
“There is a wonderful book which has been my “bible” for less pain living. It is called FIBROMYALGIA & CHRONIC MYOFASCIAL PAIN SYNDROME A SURVIVAL MANUAL…..written by Devin Starlanyl, M.D., and Mary Ellen Copeland, M.S., M.A. It describes what fibromyalgia is and isn’t and has management techniques. There are lots of particulars to deal with when you have fibromyalgia. I have adjusted my life accordingly. But by no means has my quality of life suffered.”
“We learned to ask doctors “What will be the treatment with this test AND what will be the treatment without the test?” Some doctors seems to be “of the old school”, which is good, in my opinion. It is that “if it works, don’t try to fix it.” But other doctors (and other patients) are of the “make SURE we are not doing something that could cause a problem that could be prevented if we knew.” My husband is one of those and we have to compromise on medical treatments”
“This is just my opinion, but (when we need immediate help) I call and talk further with the doctor’s nurse. Every good doctor has a nurse that can intervene and help to work people in.”
“If your insurance does not specifically exclude physical therapy, you can be successful in getting coverage. Many times an initial denial is just a bluff to see if you’ll believe the lie. Other times, a denial is the result of a physician or hospital reporting inadequate or incorrect information on the request for the service. A computer system might have denied the service if the diagnoses listed did not paint the correct picture of why you need the service. DOUBLE CHECK.”
“There is no exercise better for the heart than reaching down and lifting people up.”
-John Andrew Holmes
ARTHRITIS FOUNDATION MEETINGS
American Juvenile Arthritis Organization (AJAO) regional conferences are designed to benefit the whole family. They include Children & Teen programs, to promote independence and self-esteem. DATES and locations are : Houston, TX June 22-24, Braintree, MA, July 27-29, Bellevue, WA August 24-26 and Kansas City, KS August 3-5. Contact your local Arthritis Foundation for details.
OTHER WEBSITES
SIP is now listed on the Web site for the Johns Hopkins Center for Craniofacial Development and Disorders. That URL is (http://omie.med.jhmi.edu/craniofacial)
CONFERENCE 2002
We will be moving the conference next year to Baltimore. Dr Francomono will be offering a clinic on Friday, for those who are not in the NIH study.
INTRODUCING A SIP
“In the game of life, for a long time, I felt as though I were expected to handle one blow after another. I had my first eye surgery at age five. This was back in the olden days when you didn’t just bounce back after a day or two. Then my personal losses started mounting: my vision, not being able to function in a public school, not having many friends, etc. Some 37 years later, loss and I are still well acquainted. My hearing is deteriorating, my joints are so-so, and I still find myself (at times) waiting for the other shoe to drop. Over the years I have learned that I can’t change or stop the losses in my life. What I can control is how I respond to and interpret God’s tests for me. Several years after I became totally blind, I had an incredible opportunity. In 1976, I was one of four women from the United States selected to represent our country on the first Olympic team for the blind and visually impaired. I won a gold medal in the 100 meter backstroke. My experience was pretty dramatic.”
-Lynda
SIP Directory
A year ago, about 30 of you chose to send data to Beth. She collected and compiled that information. Mimi is now ready to do the 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 15 Angelina, Augusta, KS 67010. Also, Mimi wants MORE people to submit their information for this directory. Please do that before you forget. We need to know about you.
Thanks, Beth and Mimi, for all your efforts!
Appreciated Letters
“I can’t tell you how much this list has meant to me. Even with working in the medical field for more than 25 years, this is the first time that I felt anyone had a clue about the symptoms /problems/difficulties my sons and I
experience every day. And here is a whole list-serve full of people going through the same types of things. I get so much from this list; I am really pleased when I can offer something back.”
POSSIBLE JOINT PROTECTION
“Taking an aggressive round of anti-inflammatory drugs soon after a joint injury may help prevent the osteoarthritis that can often follow. A recent British study suggests that anti-inflammatories may protect Type II collagen – a protein that’s a major component of joint cartilage. It’s been found that the protein can degrade extensively in the year following a joint injury.”
-Mary Anne Dunkin in “Arthritis Today” quoted in December 2000 Reader’sDigest.
IGIVE.COM Update
“As we close the Year 2000, the 46 iGive.com members supporting Stickler Involved People have raised $ 529.63 since your cause was listed at iGive.com. The total raised for all causes has surpassed $809,000!” So, the scholarship committee now has over $1000 to work with for the 2002 conference. Thanks for your help!!!
RESOURCES
All of the other Stickler support groups in the world are referenced on
www.sticklers.org