Diabetes Support on the Internet
By Sharon Tarca
Our lives changed abruptly on August 7, 1991 when our only child Steven, then a 5 year old preschooler, was diagnosed with Type 1 diabetes. We didn’t know anyone with a child with diabetes, but were given names and numbers of other parents to contact regarding local support groups. Since 1991, we have met many families of children with diabetes, and we have seen we not alone in our daily struggle with this terrible disease.
Last Christmas, we bought our first computer as a family gift. Little did we know that this purchase would open a whole new avenue for meeting and sharing with families of diabetic children all over the world.
We had heard of websites for diabetes information, and as soon as we were on the Internet, we started to search. We found a wonderful site called children with Diabetes, (http://www.childrenwithdiabetes.com/) which is managed by a man named Jeff Hitchcock. Jeff has a daughter who was diagnosed with DM at the age of 24 months, and his goal is to make children with Diabetes the best source of information about Type 1 diabetes on the web. The site is designed for kids with diabetes, their parents and families and is full of very useful information that is written for the lay person. There are Diabetes Basics, a dictionary, information about camps and diabetes at school, regional info and on-line links to other sites including JDF and the ADA.
One of the best features of children with Diabetes is the chat rooms. Through the rooms, we have met many families from all over the world. We have exchanged letters ("snail mail"), family photos, news articles and even t-shirts with some of the families we have met on the Web. Some of our new friends include Paula and George and their son Michael from Montana. Mike is 7, and was diagnosed when he was three. They live on a cattle ranch in Bozeman and have invited us out there next summer for a visit! They have to travel to Denver in order to see a pediatric endocrinologist. We’ve met Ellen and Jeffry and their son Zachary. They live in Boca Raton, Florida. Zach is ten and has been on an insulin pump since he was 7. He was diagnosed at 15 months of age. His family was featured on a recent Nick News segment about juvenile diabetes. Ellen and Jeffry visited Paula and George last summer in Montana, and hope to be there again next summer when we are there. Ellen is a great advocate of using the pump for children, and has her own web site called KidsRPumping. It can be found at the following URL - http://members.aol.com/CamelsRFun/index.html.
We have also met Karen and her family from Pahoa, Hawaii, her son Travis is 12 - she sent Steve a lot of information on the volcanoes of Hawaii; Judith from Indiana is a CDE and has an 11 year old boy who was diagnosed at two months of age. Margaret and Kevin from Adelaide, South Australia have an 11 year old boy who was diagnosed one year ago, his best friend was diagnosed six months after he was! We have also become friends with the Yoerger family from South Australia. They are very active in JDF of South Australia and we exchanged Walk t-shirts with them. Timmy and Debbie from the Bronx, NY have a son TJ; on their way to Florida this summer they stopped to meet Skyla and her family in Virginia and Lyn in North Carolina. Skyla has a 14 year old daughter with diabetes; Lyn cares for her 7 year old granddaughter with diabetes. We have talked with other parents from Maine and Massachusetts, Pennsylvania, Washington and California, Maryland and Delaware, Kansas and Illinois. There is Judy from NY, whose daughter was put on a pump at the age of three - and today at age 16 still continues to pump successfully. There is Gady, from Israel, whose daughter was just diagnosed in September. Brandy from North Carolina has a one year old, just diagnosed in August. Her husband is a Marine and he just left on a six month cruise to the Mediterranean. She has hooked up with Lyn, who doesn’t live too far from her, for support.
Most of us also frequent a chat room at a web site called Virtual Nurse. Melissa’s Diabetes Chat is managed by Melissa Davis from Texas, a mother of five small children. Her oldest daughter, Kristina, was diagnosed at six months of age. Melissa’s also provides many on-line links to other web sites and information about diabetes. Her site is http://virtualnurse.com/cgi-bin/vnnurse-cgi/chat4.pl and is a good place to visit. She regularly holds forums on various topics and invites diabetes experts to join us on-line. She is currently hosting meetings in her chat room to plan for the March on Washington (Children’s Capitol Campaign for the Cure) next May 8th.
The best thing about these Internet sites is the fact that everyone we meet there can relate to what we, as parents, go through every day as we take care of our children with diabetes. If we want to vent, we do so. If we want to ask a question, we do so. We have become an international support group. We compare stories about doctors (good and bad), food, regimens, new research, school and school nurses, and about our children. Sometimes we don’t talk about diabetes at all! We share experiences about meters, syringes, snacks, sleepovers and sports. We don’t try to be medical professionals, but we can share with others what has worked or not worked for us. We support each other, cheer each other up when we need it, cry on each other’s shoulders at times. It has enriched our lives over the past year, and helped us to cope with living with diabetes. If anyone would like further information about these or other related websites, you can email me at firstname.lastname@example.org.
Originally published in the newsletter of the Greater New Haven Chapter of the JDF.
Original posting: 16 Nov 1997
Last Updated: Wednesday March 16, 2005 16:45:02
This Internet site provides information of a general nature and is designed for educational purposes only. If you have any concerns about your own health or the health of your child, you should always consult with a physician or other health care professional.
This site is published by T-1 Today, Inc. (d/b/a Children with Diabetes), a 501c3 not-for-profit organization, which is responsible for its contents.
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