Every April 10th is National Siblings Day, a fun awareness day that’s been celebrated since 1995, although it doesn’t hold official federal holiday status.
In the spirit of honoring beloved brothers and sisters, today we’re thrilled to feature stories of four families whose brotherly or sisterly connections have the unique “complication” that two (or more) siblings are both living with type 1 diabetes. There is no hard and fast data on how common this actually is, but some stats indicate a 1-in-10 risk of developing T1D by age 50 if you have a sibling who lives with this condition, or that there’s a 3-5% higher risk.
Let’s hear directly from those dealing with this special D-sibling bond…
Jillian and Joseph Rippolone from New York
The Rippolone siblings from Long Island, NY, both live with type 1. The late 20-somethings were both diagnosed as kids — Joseph first at age 7 in 1996, and Jillian a year later when she was 9. He remains in New York while she’s just recently moved to Southeast Michigan, where she’s actively involved in diabetes advocacy locally and is well-known online as @t1dchick on Instagram and other social media platforms.
In recounting her early observations about diabetes in their home, Jillian says: “I would watch (my brother) prick his finger multiple times a day as well as watch my mother mix insulins and give him multiple daily injections. I remember sitting across from him in at our kitchen table and getting grossed out when he would test his blood sugar and then lick his finger afterwards. He would ask, ‘Want to test yours?’ And I would yell, ‘NO WAY, I think it would hurt too much!’”
When she was later diagnosed at age 9, Jillian says she didn’t fully understand what diabetes was all about or how it would impact her family’s life. With a single mother raising two children with diabetes in the late ’90s, she says they were the only T1D kids in their Long Island elementary school, and there was just one other in high school — notable given they attended school in one of Long Island’s largest districts.
“I always felt responsible for my brother,” Jillian says. “When mom was at work, I would always make sure he was safe. But there are things that were uncontrollable and things I can never forget. Times before CGM’s were difficult, now looking back. One morning, I found my brother not waking up. He was breathing but just slipping away. His blood sugar was super low, and we kept trying to give him sugar and juice. I really thought he was dying. I just didn’t know because these things never happened before. We called the paramedics. They saved him. Joey passed out on several occasions after that. One time he just fell down in the kitchen and hit his head, due to a low blood sugar. Thank God I was (by then) a pro at dispensing glucagon shots.”
“Besides Joey’s lows, there were my highs. I went into DKA at least two to three times while we were growing up. One time was due to a pump failure and the others were due to severe highs and not catching them right away. College wasn’t easy either; we thought our bodies could keep up with the junk food between classes and the drinking at parties, all the time. We just wanted to feel normal. Our lives were like a yo-yo.”
Fast forward to 2018, and the brother-sister T1D team are now in what they see as “the best place” in regards to their diabetes. They’re both on the OmniPod patch pump and Dexcom CGM, and Jillian says they learn from each other and try to set good examples for themselves and others in the D-Community.
“I wanted to change the ways people thought of diabetes. I wanted others to feel like they belong and weren’t alone. I wanted to make a difference. I know how it felt to feel alone in our diabetic bubble. I was lucky I had my brother to always to relate to, but not everyone has a diabetic sibling. I’m lucky for my brother and the fact that everything we did in life, we always did it together, even diabetes.”
Quinn and Will Nystrom in Minnesota
In the middle of the country in Minnesota, siblings Will and Quinn Nystrom share a type 1 kind of life, too.
Will was diagnosed just after his 5th birthday in 1996, and Quinn was diagnosed a little over two years later at 13 years old (despite her brother’s doctor originally insisting it was “nearly impossible” that another T1D diagnosis would materialize in the family).
“Even though we grew up in the same family, within the same environment, we had different ways to look at our diagnoses of diabetes and how we chose to manage it,” Quinn shares. “I would call Will a low-tech person with diabetes… For 20+ years it’s worked best for him to use insulin pens and just a fingerstick blood glucose meter. Whereas for me, as soon as I was given a green light by my pediatric endocrinologist, I had myself hooked up to an insulin pump! Then when the first generation of a continuous glucose monitor came out, I was first in line for that too!”
As to speaking publicly about diabetes, Quinn says she made a promise to Will that she’d do everything in her power to help find a cure and improve the lives of PWDs. That led her on a journey traveling North America visiting 300,000 people and writing a book on diabetes, called “If I Kiss You Will I Get Diabetes?” She also successfully got elected to her local city council, using her family’s own D-story in her campaign and speaking about it often during her public service.
Her brother is much more private about diabetes, she says. When she was writing her book and asked him about that, he told her: “Diabetes is one of those things that you can’t complain about. You’re stuck with it every day, all day, and if you focus on it, you’re screwed. You have to be the person who decides to be positive. The truth is, bad things happen to everyone. I think I have a great life even if my pancreas doesn’t work.”
She doesn’t argue, since he’s in great health and does what works best for him — as does she.
“We may be siblings, but what works for him doesn’t work for me, and vice-versa” Quinn says. “We’re there to support each other when needed, or to have a competition of who’s blood sugar is closer to 100, or to vent if need be. Will and I traveled together to Thailand in January and had a glorious time. We have an unbreakable bond, and I think part of that is having a mutual understanding of what life is like with a broken-down pancreas.”
T1D Brothers Aaron and Stephen Kowalski
Many probably recognize Aaron Kowalski’s name from his leadership position with the national diabetes non-profit JDRF, where he serves as Chief Mission Officer. Did you know that after Aaron was diagnosed with T1D at age 13 in 1984, he actually followed his younger brother Steve, who had been diagnosed at age 3 in 1977? And no, Steve doesn’t work in the professional diabetes space like his brother does.
About their relationship, Steve says this:
“As a little kid I had it in my mind that I shouldn’t let my blood sugar be high and I always tended to be on the low side. I’m hypoglycemic unaware, so I don’t know when my blood sugar is low, and that was always a problem for me. It wasn’t until (a few years ago that Aaron) gave me a tip that drastically changed my control of my diabetes. After playing a round of golf and having a severe hypoglycemic reaction, he told me I was bolusing like a teenager and I didn’t even know there was such a thing — that teenagers needed more insulin. But after having 30 to 40 years of problems with low blood sugar, they disappeared based on the tip Aaron gave me. So in terms of how T1D shapes our relationship, I wouldn’t say it has shaped it much. But it has shaped, at least for me, the way I control my diabetes.”
Aaron also says, “We were really fortunate. I always say that our parents encouraged us to do anything anybody else did, whether it was being good at school or playing sports. (Steve) played basketball, I played golf, and we traveled to France as teenagers in the ’80s. So I think we leaned on each other, growing up in the same bedroom together and dealing with it together. And our parents were very helpful.”
For those interested, Aaron did a fun Q&A with his brother Steve a couple years back about memories of growing up with diabetes, shared as the “Kowalski Brothers Story” on the JDRF blog.
A D-Mom’s POV from Indiana
D-Mom Meri Schuhmacher-Jackson is well-known in the DOC (Diabetes Online Community) from her writing and advocacy showcased on her blog, Our Diabetic Life. She has four boys, three of them living with diabetes (!). In talking about their D-stories online, she refers to them by first-name initials only. Her oldest son M does not have T1D, but his brothers do — second-oldest J was diagnosed at 7 months old; L at age 2-1/2, and the youngest B just before starting kindergarten.
Her boys are now ages 14, 16, 20 and 22.
“My boys have an incredible bond because of the trials diabetes hands our family,” Meri says. “Having a brother or sibling next to you who knows what a low feels like, who knows that when you’re high you just want to punch something, who understands your deepest thoughts and feelings? Well, that is just a gift. I know one might look at three brothers with diabetes and wonder how I can pull the word ‘gift’ out of the air… but I know their dynamic would be different if diabetes wasn’t in the picture. Even their older brother, who does not have type 1, is bonded to them in a deep, meaningful way. We’ve learned that trials can bring us closer, or tear us apart.”
Among some of the zany things that happen at their house due to diabetes, Meri shares that another advantage of having siblings with diabetes is that if one runs out of insulin in their pump while away from home (because, they’re teenagers!), they may be able to share the same type of insulin and so there’s always someone else who can share a bit to get them by!
“I’m thankful they’ve brought us closer, and especially thankful that my boys know they are not alone: The kid sitting next to them at the dinner table gets it!” Meri shares.
We thank these families for sharing their stories — and know there are many more out there. Have something to share about your own sibling with diabetes? Or as a parent, about how your kids relate to each other re: living with T1D?
We’d love to from you! Please send us a comment on any of our social media channels, or email us directly!
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