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Resources and type 1 diabetes support systems for parents
As a parent of a child with type 1 diabetes (T1D), finding type 1 diabetes support outside of the endocrinologist office is one of the most important things you can do. Raising a child with T1D requires you to be a bit more involved in their health and day-to-day activities. Endocrinologists are incredibly capable and have an excellent base of knowledge but often lack the firsthand experience needed to relate to your situation as a parent.
Sometimes, it just helps to hear the cathartic words, "I know what you are going through." Thankfully, there are a number of outlets where parents of children with T1D can receive this type of support and access helpful resources. If you're a parent looking to navigate your child's diabetes, here are the best places to look for support.
Diabetes organizations
The flagship organization of the diabetes community is the American Diabetes Association (ADA), which is involved in advocacy efforts on behalf of individuals with T1D and those with type 2 diabetes (T2D). The ADA supports research with yearly scientific sessions and routinely sponsors local fundraising walks. Additionally, the organization maintains a robust website with insightful information, medically reviewed articles and helpful resources.
The Juvenile Diabetes Research Foundation (JDRF), which was founded more than four decades ago, offers another opportunity to connect with other people in your situation. The organization raises money for research through fundraising walks and other events — in fact, many communities have local chapters that offer a wealth of information and facilitate personal connections. At hospitals, after children are diagnosed with diabetes, they are given the JDRF Bag of Hope, which is packed with resources to help them cope and learn more about the condition.
Diabetes websites
The internet can be a really valuable resource for parents of children living with T1D. With a smartphone or computer, information is right at your fingertips. But keep in mind, a lot of it is incorrect — so make a point to seek out credible, medically reviewed information.
A good first stop is the Children with Diabetes website, which was started by two parents who raised a daughter with type 1 diabetes. There, you can read the latest news about diabetes, learn about the fundamentals of daily management, access product reviews and find information about upcoming events.
Another website to visit throughout your child's diabetes journey is Diabetes Daily. This site offers daily news articles that are relevant to parents and people living with diabetes. Sections deal with diet and fitness, cutting-edge technology and even book reviews. Additionally, Diabetes Daily has a platform with forums you can register to use.
Social media
Twitter can be a great resource (and outlet) for interacting with other parents of children with type 1 diabetes. You can follow hashtags such as #diabetes or #type1diabetes to stay up to date on the conversation. For instance, every Wednesday at 9 a.m. EST, there is an hour-long Twitter chat under the hashtag #DSMA, which stands for "diabetes social media advocacy." Usually moderated, the DSMA account will have four or five questions on the topic of diabetes, which users respond to with their thoughts and experiences.
Facebook provides some positive outlets and support through hundreds of groups and pages. The group "parents of children with type 1 diabetes" is composed of thousands of parents who interact and support one another. This group offers a firsthand look at what it's like helping children manage their T1D. For fathers looking for T1D support, there is the "D-Dads: Dads Battling Diabetes" Facebook page, which offers useful links. New articles are posted three or four times a month.
Making a connection through social media to other parents of children with T1D can provide a great deal of solace and comfort. There is a feeling of emotional relief when someone says, "I know. I've been there, and you can do this." Don't ever feel like you're in this alone!
Blogs and podcasts
Years ago, diabetes-related blogs started sprouting up on the internet and gave a patient voice to diabetes. The Death of a Pancreas blog stands out among the most popular. This mom shares the story of her daughter's journey with diabetes by writing humorous, insightful and compassionate blog posts.
The D-Mom Blog stood out enough to spawn the book "Kids First, Diabetes Second." Both the book and blog are tremendous resources for information around diabetes. The author shares stories of raising a daughter who was diagnosed with diabetes at age 3.
DiabetesMine is another blog boasting a wealth of information and valuable insights. Written by a professional journalist who is also living with T1D, the site offers current and relevant news in an easy-to-understand format.
Arden's Day started off as a blog about diabetes but has since grown to include the podcast, Juicebox. Started by a stay-at-home dad looking to take control of their child's diabetes diagnosis, these digital properties offer an intimate look at different management strategies, contain interviews with industry leaders and provide valuable tips for readers and listeners alike.
For parents of children with T1D, connecting with other parents and caregivers provides a sense of community — something you can't always get from the diabetes team at the hospital. Many websites, blogs, podcasts and social media platforms offer a great way to find support and learn from others. Whether sharing stories of overcoming obstacles in the early days or offering tips on using a continuous glucose monitor (CGM) for the first time, these platforms can serve to educate parents. Having a team of people who understand the importance of type 1 diabetes support — even if you never meet face-to-face — can help relieve stress and build confidence.
Looking for more advice around raising a child with T1D? For additional insights and information, visit the Edgepark website and read up on the most common questions asked about children with diabetes.
