Helpful Organizations and Websites for People with Type 1 Diabetes
Last week, I was asked to recommend some resources for a family with a young daughter who was just diagnosed with Type 1 Diabetes. As I created a list that the family could use, I was transported back to the time when my son was first diagnosed, and again was consumed by the fear, hopelessness and isolation that accompanies these early days.
One of the toughest things to hurdle when dealing a new Type 1 diagnosis is the feeling of being completely overwhelmed. There is so much to learn, and it all has such a frightening health impact -- counting carbs, tracking insulin dosages, learning to do injections, watching for signs of trouble. These are coupled with the feelings of being alone: Who can you talk to, where can you turn?
Although the internet is a great resource for information, it has many sites and blogs that are filled with horror stories that can render one inert with fright. Diabetes is scary enough without someone else fanning the fires of fear.
The following is the list I compiled, and is meant to serve as a starting point for the organizations and online resources to turn to for information, support, input, and community. These resources can help the newly diagnosed to start living the full, healthy life they, or their loved one, are meant to live:
1. JDRF (Juvenile Diabetes Research Foundation). This group is best known for its inroads into research and also advocacy, and has the mission to find a cure for Type 1 diabetes. Often, JDRF is best associated with its International Chairwoman, Mary Tyler Moore. JDRF has the following:
- The "Bag of Hope," meant specifically for children, this is a backpack full of "D" related items.
- A portion of the site is dedicated to the newly diagnosed, complete with online counselors:
- If you are interested in being assigned a mentor for one-on-one help, contact your local chapter of the JDRF.
2. ADA (American Diabetes Association). The ADA services the diabetes community as a whole, including Type 1s and Type 2s. The group is committed to research and advocacy, and offers:
- A portion of its site dedicated to those that have been recently diagnosed.
- Everyday Wisdom, which is a kit that helps families cope with a diabetes diagnosis. More on the kit and ordering information can be found online or by calling 1-800-DIABETES.
3. CWD (Children With Diabetes): This online community has chats, community rooms and several conferences each year, and provides:
- A Kidcare Kit, which it partnered with Sanofi-Aventis to create, is geared for recently diagnosed kids and their families. It is available from participating doctors' offices and hospitals, but no ordering information was readily found.
- A Family Support Network, where you can do everything from meeting other newly diagnosed families to finding a sitter.
4. dLife: This multimedia resource is meant to be for diabetics, by diabetics. The site includes a community, blogs, online marketplaces, videos, and a link to dLife television.
5. Other blogs to check out:
- Six Until Me by Karri Morrone Sparling. Kerri has been living with Type 1 since the age of six and offers day-by-day insights -- sometimes funny, other times poignant - of living with Diabetes.
- DiabetesMine by Amy Tenderich. Amy is the mother of three and was diagnosed with Type 1 only a few years ago. Her blog brings a wealth of diabetes related topics to the table. Amy also spearheaded the DiabetesMine 2009 Challenge to encourage creative invention for diabetes-related products.
6. Healthcentral/ Diabetes. If you are reading this, then hopefully have had a chance to peruse the other posts by the many experts and perspectives they bring to the table, from Dr. Fran Cogen, MD, Director, Child/Adolescent Diabetes Program at Children's National, to Ann Bartlett, who has been living with Type 1 since she was five, to Dr. Bill Quick, author of the Diabetes Monitor among the many, many others to turn to here.
Finally, for those new to the "D" world: Don't despair. Life will someday return to a new type of "normal." And you or your family member will be able to do almost anything you've ever dreamed of doing (just look at Supreme Court Judge Sonia Sotomayer!). When I attended the Children With Diabetes conference this past July, I met Type 1s who had: climbed Mt. Everest; competed in Ironman Triathalons; formed a team of Type 1 riders and WON the Race Across America; were winning NASCAR racers; and were training to swim the English Channel.
As you chart your future course, just make sure you've a support network and the resources to turn to so that your journey is a little easier.