June 2003
Coordinator Comment
Spring has sprung. We are anxiously awaiting new life, our second grandchild. Our lawn is awaiting a dry day to get mown. The kids are very anxiously awaiting the last day of school and a great summer. The conference is finally fully planned and we await seeing some old friends and meeting new friends. So much to look forward to!
Looking back is a natural accompaniment to this much anticipation. We have lost and gained so much recently. Many of us have graduating teens, aging parents, changes in job situations, the war altering most of our lives. We all deal with some good and some bad memories.
Hope your summer is filled with all the good!!! Join us for this year’s GREAT conference. It will be a great time for all.
CONFERENCE 2003
SIP has a great committee working very hard on the next conference. It will be July 11-13, 2003. The location will be the Park Plaza Hotel, 1335 North Fourth Street, San Jose, CA 95112 1-408-453-5340
Hotel rate of $79/89 includes free shuttle to SJ International, continental breakfast, and free parking. Be sure to ask the reservationist for the SIP rate. The reason that conference registration is higher for persons not staying at this hotel is that SIP receives a reduction on meeting room costs, for the volume of rooms rented.
Make your plans now! Our conference planner has searched the country and has a great list of speakers. Complete conference data, including speaker bios, is now on our website. Add this to the fellowship and fun of being with others who understand. You will have no better use for your time or money.
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 People, 15 Angelina, Augusta, KS 67010
Email Addresses
We promised to not bother about getting the newsletter by email. Please remember that if you CHANGE email addresses, send a notice to sip@sticklers.org ……… Again, thanks to all who have helped in this way. You are saving SIP about $1000 a year in printing and postage costs. We use those funds to help people attend our conferences. If you have an email address and have not sent it, please consider it.
Great News
For several years, SIP has been asking you to go through igive.com to place your orders for Internet purchases. We have been saving that percentage (that igive.com gives back to SIP) for financial aide for members to attend our conferences. Due to this money and the generosity of one of our Canadian member, two Stickler Involved People families will be assisted financially to attend this year’s conference in San Jose. SIP will provide the registration fees and room rentals for these families. You can all be proud that you made this opportunity for others to attend and learn.
It is not too late to get in your reservation and registration for this year in San Jose. This is such a well planned meeting there is no telling what you could miss.
Our 2004 conference will be in the Chicago area and 2005 (The tenth year celebration for Stickler Involved People) will be in Denver. Please, for yourself and for your family, make plans now to attend. We will be trying to use the weekend after July 4th, each year as OUR weekend.
ANNOUNCEMENT
Stickler Involved People is very proud to announce the creation of the Gunnar B Stickler Scholarship Fund. 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. The committee has completed the hurtles for the IRS and has a set of criteria established. Applications were available after January 1, 2003. We will proudly announce our first recipient at the conference. This fund is now available for your tax deductible contributions!! Please consider helping by making a donation in honor of your parents, or your child or your spouse. This is a good gift suggestion!
INTRODUCING A SIP
I am new to the group but not new to Sticklers syndrome! I live just outside Glasgow in Scotland. I was adopted, and often wonder if one of my parents had SS. Anyway my adopted parents did not know I had SS. There were no signs of anything wrong until I was about 4 and needed glasses.
Then from about 5 to 7, my hearing started to get bad and I went for several operations to have tubes in my ears. The doctors still did not know it was SS. My retina must have also been detaching in my left eye, but I did not notice until it was too late. I knew I could not see in my left eye, but was too scared to tell my parents. Then one day I went for a eye test and was discovered. I had an operation but there was nothing they could do.
My mum started worrying about my right eye. I went to one hospital and the doctors said there was nothing wrong with my right eye, but my mum insisted on a second opinion.
I got referred to another hospital where the doctor found the retina in my right eye was detaching and he said I had Stickler syndrome. It was the first time we had heard the term. They froze my retina with laser treatment. If my mum had not insisted on a second opinion I would have been totally blind at about 8. I had another laser treatment operation a year later and I could see good enough to drive.
When I was 15 though my retina detached again and the gel in the back of my eye became damaged. I was referred me to INTRODUCING A SIP (cont) another hospital where I had a 4 hour operation to reattach the retina and put in silicon oil. It was successful and I lost no sight as a result.
When I was 23 I had a cataract removed, but when I woke up in the recovery room I was violently sick, and my eye hemmoraged. So, I am now totally blind, as my right eye was so badly damaged, I do see some weird things floating about but no images shapes or anything whatsoever.
I am relatively lucky, as apart from being blind. I have no other problems. Though my hearing in my left ear is not brilliant but I am far away from being deaf.
I am going out with a lovely woman and she encouraged me to do research on Sticklers syndrome as we were discussing having a baby. She does not have SS, but now understands there is a fifty percent risk of passing on SS. At least, if we had a child we would know and would be prepared. If my parents had known or the medical care was more informed, they could have probably stopped my retina detaching in my left eye.
Despite SS, I had a general education , went to University and graduated top of my class with a BS with Distinction in Quality Management and Technology and began an MS research degree in Quality Assurance, But I lost my sight then.
I have since learned how to touch type and am using the screen reading package JAWS. I joined a theatre company and took part in several performances and completed a four month placement with BBC Scotland as a researcher with the radio program Good Morning Scotland.
I am writing my autobiography and want to become a creative writer/film director. I am also writing several radio plays and have learned the necessary technology to enable me to produce them myself.
I know there are a lot of barriers for a blind person wanting to get into film, but imagination is not sight dependant and I certainly have enough imagination.
As one blind man asked Nelson Mandela:
“what advice have you got for a man like me?”. Nelson said, “Follow your dreams.”
I did loss a bit of my education when I was 5-7 due to not so good hearing, but I did pick up and at least SS does not affect intelligence, we do need something to enable us to combat sight/hearing loss and everything else that go with SS, although I do know that everybody has different symptoms. I have some classic SS features, relatively flat face, smaller mouth, long fingers. On a last note, I have had about 14 operations in my life.
Mikey from Glascow
Conference Financial Aide
- Often a case worker can find funding for a parent to attend an educational conference locally.
- See www.patienttravel.org for financial help with airfare for the conference, or call 1-800-296-1217.
- SIP has a small fund to assist with hotel rental and registration fees. Please contact sip@stickler.org for further information or application form.