Sarah Howard (nee Tackett) has dedicated her career to supporting the T1D community ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Manager of Marketing at T1D Exchange.
I have always believed in getting a head start on everything. I went to the starting blocks in 1951 at age 4 and have been racing ever since. Uhh . . . when do I get a break in this race?
Wow. Thank you, Mary! This is really an interesting article. As it points out there is insufficient research on South American and African inhabitants. And there are so many different indigenous and ethnic groups and clans on those two continents! I suspect there are as many types and causes of diabetes mellitus as there are types and causes of cancer, another autoimmune disease. In both diseases there are some behaviors that can increase risks and behaviors that may decrease risks. And sometimes behavior makes no difference, because of environmental exposures and/or genetics. Should people reading this have picked different great great grandparents? Or just different grandparents? Could our mothers have picked different zip codes to give birth to us to avoid certain detrimental environmental effects?
I was 48, initially misdiagnosed as T2. For those unwilling to read the article, it says that after nations around the world crunched their data, they discovered that the majority (over 60%) of people newly diagnosed with autoimmune diabetes (T1 and LADA) were adults, not children and that 40% had been initially misdiagnosed.
10 years ago when I wrote The Sweet Lowdown for Diabetes Hands, the research I was reading said nearly 50% and 20%, respectively. As those misdiagnosed are correctly diagnosed, the percentages have shifted.
The other thing I learned from producing Sweet Lowdown, is how vehemently people will fight against any disturbance in their misperceptions. One lady said after a performance, “I learned a lot of things I didn’t want to know. ” Segments of the show are on YouTube under my name.
I was in my late 20’s when diagnosed. In 2 weeks time, I went from weighing 120 lbs to 107 lbs and had the excessive thirst and frequent urination symptoms during that time. Because my Dad had been diagnosed in the early 1950’s, I grew up watching him try to manage his diabetes, test his urine and give himself insulin (the only medication available for diabetes back then was insulin-U40 Protomine Zinc/Beef-Pork derivative- and no differentiation was made between different “Types”.) Because Dad had always had literature about the warning signs of diabetes, when I discovered I had those symptoms and sought medical help, I wasn’t surprised by my diagnosis. I began using insulin in 1976 shortly after a GTT confirmed the diagnosis. Watching my Dad deal with his diabetes made it easier for me to accept my diagnosis. I am grateful I did not have to cope with my diabetes as a child. I am also thankful for the strides in technology and improved tools and knowledge we have to better manage our condition.
I was diagnosed in 1970 at 23 months old. I have lived with T1D for 52 years. The change in what is available to help manage this disease over those years is amazing!
Diagnosed September 1991 at 24 years young but based on how much time I was sick and weak that year I’m guessing I probably actually got it at least 6 months to a year before it was properly diagnosed.
I was 11 on Jan. 5, 1982 when my Mom finally took me to our GP, who confirmed I was T1D, we had known all of Christmas/New Year trip.
My brother was diagnosed at 7 months old 1972.
In May of 1965, I had a severe case of the mumps. I was 10 years old at the time. That was when my body attacked my islet cells. It wasn’t until October of 1967, a week after I turned 12, that my T1D was finally diagnosed. Between the mumps and my diagnosis I just kept getting thinner and thinner, with more and more bouts of vomiting. So…I probably should have been diagnosed when I was in my eleventh year, but I had just turned 12 when I was hospitalized.
But I would like to say I was diagnosed at 18, so I guess technically an adult. My doctor put me on oral meds but thought it odd since I was so young, not to be on insulin. I needed to take insulin about 9 months later.
When I was 19 (diagnosed at 18) I was in Europe. There were some terrorist bombings in the city I was in. My dad told me if I was ever taken to tell them I had an incurable disease and maybe they would let me go or at least not mess with me too much.
It seems there may be a cure in sight now.
I got type 1 diabetes for my tenth birthday!
Diagnosis when I was 9 in the hospital that afternoon. Woke up in the hospital with a cup of beef broth and some adhesive tape with Happy Birthday scribbled on it in red ink.. My two year old sister was diagnosed a month later..
My dad was Dx”ed at 18 months of age, I was Dx’ed at 18 months of age, my eldest of three sons was Dx’ed at 8 months of age and his eldest of two daughters was dx’ed at 18 months of age. Welcome to monogenic diabetes.
2007, about a month before I turned 21. Then was mismanaged by my primary care doctor because they assumed I had T2 because I wasn’t a child. Finally got to see an endocrinologist after over a year on the waitlist and they straightened things out so I didn’t wish I was dead all the time. The constant swings in BG until then were horrible and a simple trip to the store would wear me out to the point I’d basically pass out when I got home. Shocking that even medical professionals don’t understand diabetes enough to know the difference between T1 and T2.
My elder cousin was diagnosed as T1D and I know it was before she was 17, and I think it was after she was 12. After measles, mumps and chickenpox I developed T1D at age 15. Three years later my younger brother was diagnosed at same age. He had measles, mumps and chicken pox at same times I did. We were both under emotional stress before developing TID. My younger cousin has never developed diabetes. The age difference between her and her T1D sister was at least 6 years. It might be interesting to compare our 4 DNA samples.
Lol on .. best friend. Never looked at it that way .. but sometimes my friendship with them .. can drive me bonky wonky. I’ve always wondered what not having T1D would be like. Do you ever wonder that too? Especially if diagnosed as in childhood like you and I obviously were. I help adults that get diagnosed and feel for them since it’s like their freedom has been snatched away ..and I totally get that (I also dabble in mental health which goes along side of any long term health condition).
Diagnosed at 16 years, 5 months, back in mid-1970’s…. Would have probably been diagnosed sooner, but despite ‘knowing’ something was seriously ‘not right’, I didn’t dare share this with my parents, as I was signed up for a school trip over the March school break, and knew, if something was wrong they wouldn’t let me go….. The weird thinking of a teenager!!! When we got back from overseas, I was told that the level my BG had reached often causes people to go into a coma! Luckily, it didn’t, and I was home safe and sound – A day and a half after landing back home, I found myself in the hospital! First family member, for both parents’ sides of large families, to ever be diagnosed with Diabetes. And, save for my Dad, who at 81 developed T1D (never had been a T2D) after cancer treatments and the shock of losing my Mom, we’re the only two.
I was 38, it was during the first few months of my first daughter’s life, and I had no idea what was going on with me until I realized I’d lost 35 lbs in 3 months. Went to the Dr.; my sugar was 300+, and I was on the verge of hospitalization (thankfully, it didn’t go that far). Six years and 2 sets of twins later (5 girls under 7), all is well, and life is good; it super stressful, but it’s still good!
1996. I had just turned 2 in December and was diagnosed in February. My grandparents spent the better part of a year bringing me to the pediatrician because I was repeatedly soaking my diaper and had gotten very thin and sickly. Was told over and over that it was “just a virus”. Was eventually rushed to Boston Children’s with a BG of over 900. I was there for a very long time.
I was diagnosed at age 6, about 18 months after I had German measles (the 14-day ones). I also had double-sided mumps just before the measles. My paternal grandmother had Type 2 and was on injections.
I have always believed in getting a head start on everything. I went to the starting blocks in 1951 at age 4 and have been racing ever since. Uhh . . . when do I get a break in this race?
Same, I had just barely turned 4. It’s easier now, but no break in sight. 😢
https://diabetesjournals.org/care/article/44/11/2449/138477/Adult-Onset-Type-1-Diabetes-Current-Understanding
Wow. Thank you, Mary! This is really an interesting article. As it points out there is insufficient research on South American and African inhabitants. And there are so many different indigenous and ethnic groups and clans on those two continents! I suspect there are as many types and causes of diabetes mellitus as there are types and causes of cancer, another autoimmune disease. In both diseases there are some behaviors that can increase risks and behaviors that may decrease risks. And sometimes behavior makes no difference, because of environmental exposures and/or genetics. Should people reading this have picked different great great grandparents? Or just different grandparents? Could our mothers have picked different zip codes to give birth to us to avoid certain detrimental environmental effects?
I was 48, initially misdiagnosed as T2. For those unwilling to read the article, it says that after nations around the world crunched their data, they discovered that the majority (over 60%) of people newly diagnosed with autoimmune diabetes (T1 and LADA) were adults, not children and that 40% had been initially misdiagnosed.
10 years ago when I wrote The Sweet Lowdown for Diabetes Hands, the research I was reading said nearly 50% and 20%, respectively. As those misdiagnosed are correctly diagnosed, the percentages have shifted.
The other thing I learned from producing Sweet Lowdown, is how vehemently people will fight against any disturbance in their misperceptions. One lady said after a performance, “I learned a lot of things I didn’t want to know. ” Segments of the show are on YouTube under my name.
I had just barely turned 4.
Age wise I was 20 years old but it was considered a juvenile onset diagnosis.
I was in my late 20’s when diagnosed. In 2 weeks time, I went from weighing 120 lbs to 107 lbs and had the excessive thirst and frequent urination symptoms during that time. Because my Dad had been diagnosed in the early 1950’s, I grew up watching him try to manage his diabetes, test his urine and give himself insulin (the only medication available for diabetes back then was insulin-U40 Protomine Zinc/Beef-Pork derivative- and no differentiation was made between different “Types”.) Because Dad had always had literature about the warning signs of diabetes, when I discovered I had those symptoms and sought medical help, I wasn’t surprised by my diagnosis. I began using insulin in 1976 shortly after a GTT confirmed the diagnosis. Watching my Dad deal with his diabetes made it easier for me to accept my diagnosis. I am grateful I did not have to cope with my diabetes as a child. I am also thankful for the strides in technology and improved tools and knowledge we have to better manage our condition.
My son was diagnosed at 18mos of age.
Age 23
I made it to my 23rd Birthday, two years out of the USN, that’s when the T1D Adventure began.
I was diagnosed in 1970 at 23 months old. I have lived with T1D for 52 years. The change in what is available to help manage this disease over those years is amazing!
Diagnosed September 1991 at 24 years young but based on how much time I was sick and weak that year I’m guessing I probably actually got it at least 6 months to a year before it was properly diagnosed.
I was 11 on Jan. 5, 1982 when my Mom finally took me to our GP, who confirmed I was T1D, we had known all of Christmas/New Year trip.
My brother was diagnosed at 7 months old 1972.
In May of 1965, I had a severe case of the mumps. I was 10 years old at the time. That was when my body attacked my islet cells. It wasn’t until October of 1967, a week after I turned 12, that my T1D was finally diagnosed. Between the mumps and my diagnosis I just kept getting thinner and thinner, with more and more bouts of vomiting. So…I probably should have been diagnosed when I was in my eleventh year, but I had just turned 12 when I was hospitalized.
But I would like to say I was diagnosed at 18, so I guess technically an adult. My doctor put me on oral meds but thought it odd since I was so young, not to be on insulin. I needed to take insulin about 9 months later.
When I was 19 (diagnosed at 18) I was in Europe. There were some terrorist bombings in the city I was in. My dad told me if I was ever taken to tell them I had an incurable disease and maybe they would let me go or at least not mess with me too much.
It seems there may be a cure in sight now.
I got type 1 diabetes for my tenth birthday!
Diagnosis when I was 9 in the hospital that afternoon. Woke up in the hospital with a cup of beef broth and some adhesive tape with Happy Birthday scribbled on it in red ink.. My two year old sister was diagnosed a month later..
My dad was Dx”ed at 18 months of age, I was Dx’ed at 18 months of age, my eldest of three sons was Dx’ed at 8 months of age and his eldest of two daughters was dx’ed at 18 months of age. Welcome to monogenic diabetes.
1968 was a bad year for the US and me but 54 years later I am thriving…
2007, about a month before I turned 21. Then was mismanaged by my primary care doctor because they assumed I had T2 because I wasn’t a child. Finally got to see an endocrinologist after over a year on the waitlist and they straightened things out so I didn’t wish I was dead all the time. The constant swings in BG until then were horrible and a simple trip to the store would wear me out to the point I’d basically pass out when I got home. Shocking that even medical professionals don’t understand diabetes enough to know the difference between T1 and T2.
My elder cousin was diagnosed as T1D and I know it was before she was 17, and I think it was after she was 12. After measles, mumps and chickenpox I developed T1D at age 15. Three years later my younger brother was diagnosed at same age. He had measles, mumps and chicken pox at same times I did. We were both under emotional stress before developing TID. My younger cousin has never developed diabetes. The age difference between her and her T1D sister was at least 6 years. It might be interesting to compare our 4 DNA samples.
Still living the life after 66 years withT1 as my best friend;)
Lol on .. best friend. Never looked at it that way .. but sometimes my friendship with them .. can drive me bonky wonky. I’ve always wondered what not having T1D would be like. Do you ever wonder that too? Especially if diagnosed as in childhood like you and I obviously were. I help adults that get diagnosed and feel for them since it’s like their freedom has been snatched away ..and I totally get that (I also dabble in mental health which goes along side of any long term health condition).
Diagnosed at 16 years, 5 months, back in mid-1970’s…. Would have probably been diagnosed sooner, but despite ‘knowing’ something was seriously ‘not right’, I didn’t dare share this with my parents, as I was signed up for a school trip over the March school break, and knew, if something was wrong they wouldn’t let me go….. The weird thinking of a teenager!!! When we got back from overseas, I was told that the level my BG had reached often causes people to go into a coma! Luckily, it didn’t, and I was home safe and sound – A day and a half after landing back home, I found myself in the hospital! First family member, for both parents’ sides of large families, to ever be diagnosed with Diabetes. And, save for my Dad, who at 81 developed T1D (never had been a T2D) after cancer treatments and the shock of losing my Mom, we’re the only two.
I was 38, it was during the first few months of my first daughter’s life, and I had no idea what was going on with me until I realized I’d lost 35 lbs in 3 months. Went to the Dr.; my sugar was 300+, and I was on the verge of hospitalization (thankfully, it didn’t go that far). Six years and 2 sets of twins later (5 girls under 7), all is well, and life is good; it super stressful, but it’s still good!
1996. I had just turned 2 in December and was diagnosed in February. My grandparents spent the better part of a year bringing me to the pediatrician because I was repeatedly soaking my diaper and had gotten very thin and sickly. Was told over and over that it was “just a virus”. Was eventually rushed to Boston Children’s with a BG of over 900. I was there for a very long time.
I was 2 1/2 years old.
I was diagnosed at age 6, about 18 months after I had German measles (the 14-day ones). I also had double-sided mumps just before the measles. My paternal grandmother had Type 2 and was on injections.