The story of Liljana

My name is Liljana and I am 11 years old and have adrenal insufficiency because of ACTH deficiency and primary ciliary dyskinesia. I had a lot of breathing problems, asthma, and illnesses when I was really little. Colds would get really bad and turn into sinus or ear infections or bronchitis or pneumonia. My twin would fight things like a normal person would so it seemed so unfair. I was lucky that doctors were able to help with some surgical procedures, medications and therapies. Those problems didn’t go away but were managed.

When I was 9, I was small for my age but no-one was concerned. I would also catch a virus and have cyclical vomiting and get dehydrated and low blood sugar. We got COVID-19 at school and within a few hours of testing positive, I had a temperature over 105 degrees, vomiting, and went to the hospital. My blood pressure was very low, heart rate and temp high. The more fluids they gave me the worse I got. I had to go to the ICU and be put on a ventilator and given A LOT of medications to try to and bring my BP back and control things my body was not able to do for itself. The doctors thought it was a rare reaction to COVID that just caused a lot of systems to go haywire. A month later, the same thing happened but no COVID. Doctors from all specialties did a lot of tests to try and figure out what was going on. Endocrinology learned that my cortisol was basically nonexistent and that it was an ACTH deficiency causing it. My pituitary gland makes all of the other hormones it needs except for ACTH. They started me on the daily meds that I take three times a day and gave me an emergency injection for when I am going into an adrenal crisis.

I’ve grown tremendously since then and have been able to do most things others can. The problem is viruses, broken bones, or even exhaustion or stress can deplete cortisol and have me go into a crisis. Very recently I was perfectly fine until I wasn’t. I felt shaky and a bit of shoulder pain that are signs of lows, and within 30 minutes, I vomited the stress dose and needed my emergency injection and to go to the hospital after calling 911. I was able to avoid the ICU and just stay 4 days. Many doctors still do not fully understand adrenal insufficiency and how that looks. Even with an emergency plan in place and my mom telling them I needed more steroids, they were just giving fluids and watching my BP crash again while I had high heart rate and a temp over 106.7 degrees. It is scary having a condition that many do not understand because you always have to make plans or arrangements to look out for yourself. Our vacations, school field trips, and activities have to consider risks, exposure, and what medical care is available. It isn’t easy being rare, but that is why it is important to share your story so others than recognize how much we have to do just to maybe appear healthy and that we don’t take any of that for granted. I am proud to share my story as a champion for my local children’s hospital and as a Children’s Miracle Network ambassador.