Coalition Voices Blog: Anna

Hi, I’m Anna. I’m a 24-year-old living in Los Angeles.

While I may look healthy to the rest of the world, I silently suffer from a rare disease called Juvenile dermatomyositis (JDM). JDM is an autoimmune disorder that impacts 3,000 to 5,000 children in the United States. For children and young adults like myself who have JDM, simple things like walking and playing with friends is exhausting.

I am one of the unlucky few who have to live with this disease. And it has completely altered my life.

Because of JDM, I developed arthritis in my knees and hips, making every step I take difficult. I even had to go on chemotherapy during high school and at the beginning of college. This left me constantly fatigued and in pain. Simply sitting up in a chair was challenging, let alone getting through a full day of work or school.

On top of it all, I was expected to manage my medical records when I could barely manage getting out of bed. As my disease progressed, so too did the doctor’s visits, treatments, and medications I had to keep track of, while communications between my doctors remained strained or nonexistent.

On three separate occasions I visited JDM specialists who expected me to come with a complete history. While it isn’t the most difficult to get my records from my rheumatologist, I have seen numerous other specialists and it would be nearly impossible for me to compile an exact history. Each of these doctors chastised me for not coming “prepared” which made me feel like I was doing something wrong when in fact, I was doing everything in my power to take care of myself.

I needed my health care providers to help me heal, not add more to my plate or guilt me, especially at 15 years old.

My biggest concern is getting in some sort of accident that leaves me in the ER unconscious. Without access to my records, no one would know about my complicated history or how to get me back to health.

All of this pressure can’t be on patients and their families. Our focus should be on healing.


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