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Online support for those with type 1 diabetes – what is out there?

Oct 14, 2014

Many communities have support groups for patients with diabetes or type 2 diabetes, but few have the same opportunities for folks with type 1 diabetes to come together and share experiences or listen to type 1 focused presentations.  Take Control of Your Diabetes had a track for those with type 1 this year which was very well attended in our area and patients and family members appeared to be very grateful.

But of course TCOYD comes around but once every few years and to only a handful of communities nationwide.  There is a great group supported by JDRF for bike riding in Seattle, and teen groups at the Barbara David Center in Colorado.  But overall, few “support” groups specific to people with type 1 diabetes for a variety of reasons including, but not limited to, lack of a large enough population, incredibly busy lives and lack of consistent attendance.

I have many patients who feel isolated by type 1 diabetes, and I am surprised that so many have never met another soul with type 1.  So teaming up a patient with an online support group seems to be a positive step towards increasing a feeling of belonging and encouraging sharing of tips for managing and coping with diabetes.  If you have not worked closely with type 1 diabetes, it truly is a fellowship.

There are many options and here are a few to consider:
ADA (American Diabetes Association) – Information about type 1 diabetes, recipes, cookbooks and self help books, safe at school programs and advocacy.  Bike rides and walks in most states to help raise money to support efforts of the ADA and to bring people together with diabetes.  Camps for children with type 1 diabetes, and some areas have an A1C adults with diabetes support group program. 
Children with Diabetes – Online education, along with a huge national conference for kids and families with type 1 diabetes
Riding on Insulin – cycling and skiing adventures for individuals with diabetes (kids and adults), and a place for medical coaches that want to be involved in the type 1 community
Diabetes Sisters – a great network for women with diabetes.  Online community along with national conferences and blogs to read
D-Life – Recipes, videos, blogs and meeting others through a diabetes community
Insulin Nation- delivers comprehensive information about the technology and science of diabetes therapy and provides up to date information for those who take insulin
Diabetes Hands Foundation – “connecting and energizing people with diabetes”
JDRF (Juvenile Diabetes Research Foundation) –Major goal is to fund research to find a cure for diabetes, education booklets and advocacy available.  Networking at events, fundraising walks and bike rides.

Listen to your patients, if they are asking for support, provide them with some options. Type 1 diabetes is a tedious but “do-able” disease.  Having someone who understands the daily tasks and can offer support whether through a face to face contact, support groups in the community or online may provide that extra something that makes the tasks seem less burdensome.  What support options have you found helpful for your patients?

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