Sarah Howard
Sarah Howard has worked in the diabetes research field 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 Marketing Manager at T1D Exchange.
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If you were diagnosed with T1D as a child or have a child with T1D, were you first misdiagnosed at the initial doctor visit? If yes, with what were you misdiagnosed? Select all that apply. Cancel reply
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my mom actually diagnosed me and asked to be tested specifically for it. They looked at her like she was insane, but did the ketone test, and BG and I was large and in the 400 range. not in DKA at the time of diagnosis yet though.
As an 11 year old girl, I spent a few months going to the doctor with signs and symptoms and we were always told it was just hormonal changes/puberty. Nope. T1D.
I was 11, too, and my Mom was pushing for it to hormonal changes. Everyone looked at her like she was crazy, my brother had been diagnosed 10 years earlier.
My parents took me to three doctors in 1945. Those doctors did not make a diagnosis. I was given a tonic to increase my appetite. I had stopped eating.
A fourth doctor had my blood sugar tested and I was finally correctly diagnosed, a few days after my 6’th birthday in September, 1945.
I was diagnosed in 1987 and had lost a lot of weight as a child and was very thirsty. My mom set an appt and we got lucky and the pediatric type 1 expert was the doctor I met with and he immediately knew what was wrong and I was shortly on my way to Children’s Hospital for a week.
The first diagnosis was that my mother, who had reported my symptoms, was neurotic and needed counseling. One urine test later (insisted upon by mom) and a subsequent blood test confirmed the correct diagnosis.
Hi Cynthia – that happened to my Mom, too! My poor Mom ended up having to yell at the third doctor because they all just thought I was a liar and she was worrying too much.
Both of my youngest two children were correctly diagnosed at the ages 6 and 11, just 3 months and 4 days from one another. We had a phenomenal pediatrician.
My grandmother was concerned because I constantly asking for water. My parents took me to children’s hospital where I was diagnosed in 1956 at age 4.
After a three month onslaught of chickenpox, bronchitis and measles my mother took me to the pediatrician because I accidentally wet my bed. I was 8 years old. After answering a few questions, he did a urine test in the office, then sent me to the hospital for a blood test. He told my mother he thought it might be diabetes because “it ran in the family”. This was 1955, genetic studies were a long way off, but because my doctor knew my grandfather had diabetes, his guess was correct.
I actually diagnosed myself when I was 10. My father was T1D and was constantly telling me and my little sister to watch out for symptoms (increased thirst, urination, etc) and encouraging us to use the ketone strips he had in the house. One summer day I was annoyed with how often I was going to the bathroom, and thought I needed to check- but couldn’t find the strips. When my parents got home from work, I asked for “the pee strips” and my mother insisted I didn’t have diabetes. I said I wanted to check anyway, and sure enough: ketones. My dad took me into the kitchen and used his blood sugar meter: BG ~300. The next morning he and I went to the hospital for my official diagnosis.
After showing several symptoms at age 7, my mom took me to the pediatrician who immediately sent us to the Hospital for Sick Children in Toronto. They were the first hospital in the world to administer insulin to patients and their endocrinology team specializes in type 1 diabetes.
I was dx in 1967, at the age of 5. I was in DKA. We had just returned, from living in Germany, to the USA. I am a military brat. My sister and I were staying with our grandparents for two weeks and 55 miles away our parents were house hunting. My grandparents thought my lack of appetite was due to difference in foods I was used to eating in Germany. Frequent urination and thirst. Once my parents returned my mother knew immediately I was ill and took me to our pediatrician. This wonderful man told my parents I was dying and to put me in the car and follow him to the hospital. He knew I was in DKA and said we didn’t have time to call for an ambulance. He took care of me for many years to come.
My son was dx at 21 months of age, by me and then confirmed by his MD.
We lived and worked in Kaiserslautern 1976-1977, then Zweibruecken 1978-1981. The insulin co-pay at that time was $1. Ahh, the good ol’ days. ( ♥ ͜ʖ ♥ )
I was dx at the age of three — had been lethargic, thirsty, etc for nearly a week. One day, I had been playing in my older sister’s room, and Mom came in to tell me to put her things away because she would be home from school soon. Mom found me non-responsive and called an ambulance. My blood glucose was 1600 at the time of admission in 1970, and I was in the hospital for 8 days.
To this day (more than 50 years later), she feels ashamed that she didn’t recognize how sick I was. I remind her that there was nothing to be done about it, even if she *had* noted it earlier.
My son was diagnosed at 23 months old and was in the hospital for the stomach flu. He was sent home even after I asked them to check for diabetes, being my brother had it as a juvenile. I was told I worry too much… Hence 2 weeks later we ended up at CHOP in Philadelphia with an extremely sick child.
My BG was 564 when I presented to the ER at 8 yo, having lost weight and peeing every half hour. It was not a hard call….correct diagnosis amde.
At 5 and I had all the classic symptoms, frequent urination, lack of appetite, lethargic, losing weight, funny breath odor… (probably more symptoms, but you get the idea). The first 3 doctors said I wasn’t sick, that I was faking it, that I was a liar, and that it was all in my head and I was just trying to get attention.
The 4th doctor got it right. He put me in an ambulance for the nearest hospital.
It was initially thought that I had a bladder infection. After a weekend of being on antibiotics and no change, the doctor had blood work done to confirm his suspicions that I had type 1.
Diagnosed in 1957 at age 10, was ill for 1week. Family doc said it was stomach flu. I became unconscious, taken to LA County Hospital, admitted for 2 weeks. Spent most of time learning how to take care of myself test tube urine testing, glass syringes & SS needles (boil).
My Mom did medical transcription for a small family practice and was close to the doctors. She recognized my symptoms from things she heard when doing transcription and asked for me to be tested. She was correct, and I was correct too as I thought I had strep throat and I did. I was 10.
I was diagnosed as a pre diabetic when I was 7 the doc was right but not a t1d