Ask Joslin: Type 1 Diagnosis, No Family History

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Why did my child get type 1 diabetes when there is no family history of it?

You are not alone.  In fact, having someone in your family who has type 1 diabetes when you are diagnosed is the exception, rather than the rule.  As Dr. Jason Gaglia , M.D., M.M.Sc. , researcher at Joslin Diabetes Center explains, “At most only 10 to 15 percent of persons with type 1 diabetes have an affected first degree relative (the majority of people diagnosed do not have a known family history of type 1 diabetes). Given that the genes are very common, why some people develop type 1 diabetes and others do not is not clear. It is hypothesized that there may be environmental factors that may play a role (viruses, certain food items, etc.) but this has not been fully answered as of yet and may be different for different individuals.”

Unfortunately at present we don’t have a way to identify those at risk when they don’t have a family history.  As more research is done on type 1 diabetes we may find out more about environmental triggers as well as genetics and be better able to predict who will come down with the disease.

24 Responses to Ask Joslin: Type 1 Diagnosis, No Family History

  1. Maureen says:

    I was diagnosed at age 9 and my sister was diagnosed at age 50, both type 1. She was diagnosed 31 years after I was.

  2. Bobb says:

    I was two weeks short of turning ten in 1963 and a sister, ten years my senior, was diagnosed T1 at age 63, 53 years after me! That’s it for family history!

  3. Josie Tucker says:

    At age 6 my brother was diagnosed type one and there were no known prior cases. Then niece from a sister was diagnosed as type one about 20 years later at age 12. Then our son developed type one at age 28. His daughter was diagnosed with type one at age 11. Finally at age 68 I developed type 2 although I was not overweight, ate right, and exercised at least an hour daily. This disease has no rules.

  4. jennifer chadwick says:

    I was diagnosed at age 9 after weeks of attempting to break out with the measles (virus)-I was running sugar in my urine (the only way to test at that time) and was to be admitted, but I did break out. I was required to not eat sugar (no one knew about carbs at that time) and it was thought sugar in urine would go away after I got over the measles-it DID NOT. Within months, I was hospitalized with high urine sugars and skin peeling on hands and feet. Diagnosed Type 1 Insulin Dependent Diabetes. Our family hisotry NO Type 1’s (1 suspicious death young girl came home early 1920’s complaining of a headache and laid down and died). Everyone else in family that has been diagnosed Diabetic has been middle age and/or overweight. My mother asked the Internal Medicine Diagnostician(no such thing as Endocrinologist or none within 1000’s of miles if so) if the measles could have “settled” in my pancreas and was told No. Measles is a virus and virus can settle in organs. Who knows?

  5. Gloria Lodge says:

    I was diagnosed Type I at 2 years old, my mother with Type 2 within a year of me at age 37 (she eventually developed Type I) and a brother who developed Type I 3 years after me at age 15. Three out of four immediate family members with Type I and no other family history – anywhere. My Dad lived to 86 with no diabetes.

  6. Gloria Lodge says:

    And I’ve lived with diabetes 53 years (I’m 55) with no aunts, uncles, grandparents or cousins developing Type 1.

  7. Marlee says:

    I was diagnosed as Type 1 in 1963. No family history. However, it’s possible I contracted diabetes following a virulent bout of stomach flu. Also, the Cocksackie virus was prevalent at that time. Who knows!

  8. Dick says:

    No history of T1 in my family and I was diagnosed at age 19. My sister 3 years younger than me was diagnosed with T! at age 57.

  9. Rich says:

    My sister 3 years elder was diagnosed at 18.

  10. Rich says:

    I was diagnosed at 37 the same age my sister passed away. I was told it may have been something we were both exposed to – environmental, virus, etc.

  11. Sarah Anders says:

    Although the science indicates there’s no correlation, I had gestational diabetes while pregnant with my son, who was diagnosed at age 12. I’ve always wondered if the scientists aren’t missing something.

  12. Bill Witt says:

    I am one of these folks.
    No diabetes in the family before or since my diagnosis
    with Type 1 in 1955 when I was 12
    I have been fortunate. Still alive and well!
    I am grateful. Bill.

  13. Doreen Adams says:

    I was diagnosed at age 10 with type 1 and my brother was diagnosed after me when he was 22 so…….

  14. Lynda Spindor says:

    I have ben a type 1 diabetic for 60 yrs with no one else in the family having diabetes. When I was 7 yrs old I had the hard measles and I truly believe that the measles were the cause of the diabetes. I was a very healthy child and a very adult and have been able to manage the diabetes extremely well.

  15. Bill says:

    Been type 1 50 plus yrs with no relatives having it or being familiar.
    MD at Dx said trauma induced, as my father had passed away standing next to me while on stage during a community play. He said it was analogous to temp diabetes due to stress as seen in pregnancies, major operations, and severe accidents..

  16. Gordon Schiff says:

    I was diagnosed at age 3 just after the little boy next door, whom I used to play with, contracted polio.

  17. Kris says:

    I was diagnosed at age 50 with T1 after a very stressful year. Otherwise in good shape/health. My grandmother on father’s side got T2 in older age (80 I think) and her daughter (my aunt) also was diagnosed with T2 in her 60’s or 70’s. They never exercised or ate well, and were both on the heavy side. My doctor did not think that was enough “inheritance” to warrant my affliction.

  18. danielle says:

    I became a type 1 insulin dependent diabetic at the age of 35. it was clear to me from the day of its onset that I knew I contracted diabetes. It took 3 days for my doctors and a call to Walter Reed to confirm I was type one that I was in ketoacidosis. Absolutely NO family history. I also told my husband that I believed the onset was caused by environmental factors as we were having extremely large pine trees in our yard taken down. The day after the trees were fell, I suspected the cause was either the polen from the pine trees fungus/mold from the trees had fungus caused my sudden onset.

    I wonder how many others have had this same experience

  19. Patricia Glass says:

    Diagnosed at age 13 yrs 360 days as celebrated me 14th birthday 3 days following diagnosis. This was in 1960.(54 years ago). I had numerous URI with cold symptoms and extreme difficulty breathing over the years prior to diagnosis. Had 1 great maternal Aunt who had been diagnosed at age 19 in the middle 20’s and was one of the first ones able to take Insulin. Her brothers were going to the U of I medical school and I am sure they were able to get it to her more quickly related to that. She had 1 son in 1935 and lived until the early 1970’s. No other Type 1’s in my immediate family at all.

  20. F says:

    Female, I was diagnosed with type 1 diabeties at age 7 so I’ve had it for 10 years (17 now) I’m the youngest in my family. However my brother (19) has never been diagnosed with it which is weird as there’s no family history and my brother was the first child. So why did the second child get it without the first child getting it and no family history

    • Christina says:

      Same here! My family is HUGE. My dad is the baby of ten kids; mom is the middle of 5. I have 34 first cousins and one older brother. Not one single person in all of my family has T1D. I was 7 when I was diagnosed in 1990. I’m pregnant with our third child, praying NONE of them ever get it. But isn’t it SO weird that no one has it?!

  21. Rena Smith says:

    My son was just diagnosed type 1 diabetes after a bout with the flu and steriods. I believe it was the combination of the two that brought it on. There has been a great deal of research out there supporting either viral or steroidal onset. Some of the doctors we came across said it had to be genetics. But after 3 / 4 generations of long living ancestor with no health issues other than old age it is hard to believe it is genetics.

  22. Adrienne says:

    I think my son’s T1 onset was triggered by being in a modular classroom. Poor ventilation therefore the kids kept getting stomach viruses. I wanted to request a classroom change by his 3rd stomach virus that year but was told it’s normal for kids to get sick that much. He was never sick that often before. Should have followed my instincts.

  23. Daniel Silva says:

    Diagnosed at 29 Type 1. Smoked Cannibis(marijuana) since I was 14. Finally decide to grow up and quit and get my life together. After 3 weeks of not smoking I began to have all the symptoms. I thought it was becuase I was cleaning out. But one night walking down the stairs to pee, I fell, and my wife took me to the hospital. My life has never been the same and I do believe we are contracting this disease from somewhere. I also believe that cannibis was keeping at bay as I started smoking again and watched my sugars level out and I have to use less insulin. I wish I never quit smoking gods medicine, as I truly believe it was keeping at bay.

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