We had never heard of JDM until a dermatologist said it possibly was what our daughter Leighton was experiencing.
For months, Leighton suffered from chronic rashes that our primary pediatrician assured us were just normal heat rashes. She would leave for school with a clear face and return home with a puffy rash all over her face. Initially it had started on just her face. By the summer of 2022, it appeared on her hands and elbows.
We decided to take her to a dermatologist in July of 2022 for some pigmentation on her forehead. School would be beginning the next month and we didn’t want her to feel uncomfortable. While the rashes on her hands were a concern, the main reason for the appointment was her forehead.
We were seen by a PA at a local dermatology practice. She immediately advised us she wanted to consult with the lead physician of the practice after examining Leighton’s hands. They recommended a punch biopsy on her knuckle to get a better understanding of what could be going on.
After a week of waiting, we received her results. A connective tissue disease had been detected. Our dermatologist called us on a Friday evening from her personal cell phone to inform us we had an appointment with the head of dermatology at Ann & Robert Lurie Children’s hospital the following Monday.
At this visit, we were also met by a doctor from rheumatology who asked to speak with us and examine Leighton. After her examination, she recommended admitting Leighton for further testing and treatment. Leighton was admitted August 1, 2022 for further testing and began treatment. This is also when we received her diagnosis of Juvenile Dermatomyositis. JDM is a rare autoimmune disorder that constricts her blood vessels, cutting off blood flow to her muscles and skin.
Since August 1, 2022 we have watched our little girl fight through fear of the unknown. She recently completed 5 months of steroid treatment. She continues to take a list of daily medications and also receives a weekly injection of medication. As tough as the experience has been on our family, we are beyond blessed to have received the answers we have so quickly. We have an outstanding medical team supporting Leighton along with family and friends.
Leighton is a vibrant little girl. She has not let her diagnosis stand in her way. She’s a talented gymnast and is looking forward to competing in the upcoming 2023/2024 season. While she has had some challenging days, she’s had many good days.
We are walking in her honor because before her diagnosis, she would not have been able to finish this walk. Thankfully today, she can.
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