Guest post by Ellen (CureT1Diabetes)
First a big thank you to Cherise for creating the awesome #DSMA chat on Twitter on Wednesday nights; a wonderful hour where the diabetes online community gathers for support, humor, advice, knowledge and camaraderie. Second, my sincerest gratitude also goes to Cherise for giving me an opportunity to guest blog this month and share some of our family’s story and what we do for diabetes advocacy.
Our son was diagnosed with type 1 diabetes (T1D) in 1989, as a still nursing on demand 15 month old toddler. On that day our world turned upside down. We went from a life of blissful spontaneity to one that was rigid with following the clock, giving 2 shots of NPH/R insulin per day, 4 blood glucose checks per day, measuring, weighing and timing every morsel of food our son ate, etc. Looking back, we knew virtually nothing about how insulin worked, had no encouragement to make adjustments on our own so there could be some flexibility in life, and were essentially just getting through day by day. Thankfully, our daughter was born approximately 9 months after our son was diagnosed and she has brought tremendous joy into our lives.
While we were at the hospital during our son’s diagnosis of T1D, I asked the social worker to please get me in touch with another mother who has been through this. Fortunately for us, the social worker connected us with Barbara Singer, one of the founding members of the Diabetes Research Institute Foundation (www.diabetesresearch.org ). Barbara was a beacon of hope then and continues to be one 21 years later as well. She ran a support group where we first met other families with children with diabetes. Several friendships were formed and have lasted a long time as a result of that group.
Fast forward, by the time our son was 7, we were on our 4th pediatric endocrinologist who was the first to truly empower and give us confidence to get blood glucose in target more frequently and she offered us a pump at our first visit. The three prior physicians never mentioned it and it was new to me that it existed. It took about 6 months to entertain the idea, but finally he went on the pump during the summer prior to starting 2ndgrade and we began to feel so much better about understanding diabetes, insulin, etc. We no longer felt at the mercy of the doctor’s decisions, but rather were fully supported by a brilliant, approachable, funny and available pediatric endocrinologist. My friend nicknamed her Dr. WOW (walks on water), a goddess! Back then there were not many children on pumps. She inspired me to create the website www.kidsrpumping.com so parents of children on pumps could share their success stories, and ultimately convince doctors who were skeptical or lacked knowledge that pump therapy can be successful in children. The website is really only maintained for the thank you page here http://www.kidsrpumping.com/thankyous.shtml.
Thanks to Jeff Hitchcock who created Children with Diabetes (CWD) www.childrenwithdiabetes.com, our family has connected with other parents online from around the USA and the world, in the parents’ chat room. Eventually CWD also started to have conferences in Orlando and California and we have attended many of those over the years too. We learned the value of never again feeling alone with diabetes, and having the ability to learn about best practices and the latest cutting edge technology. The CWD website and the conferences continue to bring thousands together each year from around the world and every person in the family benefits. Their weekly “What’s New” newsletter is invaluable. This past summer our daughter volunteered at the Friends for Life conference and attended on her own. As a sibling of a child with diabetes, she too needed support and she has made many friends at these conferences. CWD is also adding more content for adults at their conferences. I encourage everyone with type 1 diabetes and/or a loved one with T1D to explore the website and conferences.
As a family, we continue to be inspired by the work done at the Diabetes Research Institute, and thanks to my husband’s efforts, IBM employees and retirees have donated a total of approximately $400,000 to the DRI through the IBM annual employee charitable contribution campaign over the years. I have also served on the PEP (Parents Empowering Parents) squad for the DRI.
Separately, I am honored to be the Vice President of the Children with Diabetes Foundation www.cwdfoundation.org , a foundation that raises money and funds research that will lead to human clinical trials to cure and prevent type 1 diabetes.
I also feel it’s necessary to continue to raise awareness about each type of diabetes, and to dispel the myths that circulate through the media. Every type of diabetes is a struggle. There is not a type of diabetes that is easy to live with and no one chooses to have diabetes. All types need to be cured and every person with chronic illness deserves to be empowered and supported through kindness and understanding
Research to cure and prevent diabetes takes money and lots of it. Every person with a loved one with any form of diabetes, needs to do their part. Please do what you can do to raise awareness of the need to cure diabetes, and/or to raise money for cure-focused and prevention research. Your efforts matter tremendously. Thank you.
To learn more about about how you can get involved, click here to watch “Ellen’s Diabetes Awareness Month Video.
Ellen infrequently blogs at n=1 overcoming exercise resistance http://nequalsone.blogspot.com/.