The Mortensen Family and their experiences of ENDIA and autoimmunity

Pictured from left to right: Claire (4 years old), Alice (2 years old), Cameron (7 years old), Mia (2 years old). Claire and Cam are enrolled in TrialNet and the twins in ENDIA.


It’s about more than type 1 diabetes

ENDIA Dad, Luke, has lived with type 1 diabetes since he was aged 7 years old. More recently, he has been diagnosed with other autoimmune conditions including pernicious anaemia (reduced red blood cells as the body can’t absorb enough vitamin B12) and Hashimoto’s disease (under-active thyroid). Grandma Mortensen has Addison’s Disease (an autoimmune condition attacking the adrenal glands, so they are unable to produce hormones e.g. cortisol which helps the body respond to stress). Uncle Mortensen also has Hashimoto’s disease. Needless to say, there is a strong history of autoimmune conditions in the Mortensen family.


Getting involved in ENDIA

As an NDSS registrant, Luke received a letter from the NDSS asking whether he might be interested in participating in the research. He was very keen and asked Cynthia if she would mind participating. It’s no lie that ENDIA relies heavily on mum wanting to participate in the study too, so the final decision was with Cynthia. Given that type 1 diabetes is a subject close to Luke’s heart, Cynthia could not say no. She felt that if the children were to be at risk, this study would provide the monitoring for the twins that they would not get otherwise. Although they test the children’s blood sugars with a test kit at home, this can not test for the early markers of type 1 diabetes that an ENDIA blood test can. So Cynthia and Luke enrolled their precious twin girls to participate in ENDIA.

The family have been involved since before the twins were born (over 3 years), so they are now participating with less intensive 6 monthly visits. Cynthia described participation in ENDIA so far as “pretty easy”.  Twin, Alice, has had some ongoing medical issues since birth. She has a team of doctors caring for her. So ENDIA visits just slotted in easily around her other medical visits. “It has been no big deal in that regard” Cynthia stated. “The ENDIA girls, Julianne in particular, make things as easy as possible.”

“We’re proud to have our children involved in the study. Luke is extremely glad.”

Getting a call from ENDIA

Type 1 diabetes was always on that family’s radar; Luke has it, and they understood their children were at a slightly higher risk than the general population. So, the Mortensens were a bit shocked to receive a call from ENDIA to say that Alice had markers for coeliac disease. Alice had been tested for it earlier, so when the test came back positive, Alice’s treating doctors became very interested in ENDIA; “How did they find that?” one doctor asked. “Now we know Alice has coeliac, it makes it easier to adjust our lifestyle now and we are just grateful that she did not get sick before the diagnosis. We’re grateful for that.” Cynthia said. “Since changing her to a gluten free diet, she has become more energetic and more toddler like. She has less bloating and is just generally happier. We’re thankful for this early identification. With Alice’s complex medial history, things could have become a whole lot more complex. Not that we’re happy that Alice has got coeliac disease, but if you have to have it, it’s good to know early. We are all living a healthier lifestyle now.”

Type 1 Diabetes and Autoimmunity

The Mortensen family now have four autoimmune conditions to their repertoire. “ENDIA is more than type 1 diabetes for us. Bigger picture, all this autoimmunity must somehow link together. Alice has a team of doctors looking after her, but it was ENDIA that found the coeliac disease. ENDIA is the best decision we’ve ever made for our kids.