Living with Dermatomyositis

Could you please tell us a little bit about yourself?

 

My name is Grace Liao. I was born and raised in Shanghai, China. I moved back last year to Vancouver to live with my grandma for grade 9, and now I’m at SMUS going into grade 11. 

 

Would you mind sharing a bit about your condition and your experience especially as a teen?

 

I have Dermatomyositis. I would say it’s a pretty rare autoimmune condition, I haven’t met anyone with it before. I remember reading somewhere that approximately 1 in 100,000 people are diagnosed with it, which is pretty crazy.Dermatomyositis is basically an autoimmune disease where you can get muscle inflammation and swelling as well as skin rashes. In severe cases, it can also affect your lungs. There are lots of variations of it but for me, I had a subtype called MDA5 when I was first diagnosed. I'm also lucky enough to be in the group of patients that are stable after a few years of treatment. My experience as a teen has been I would say pretty good, compared to those who are diagnosed later in life. Since I'm still young, the severity of the condition is not as bad. 

 

When did you first find out you had your autoimmune condition? How did you feel?

 

So I first found out in August of 2021. My eyelids started swelling up and getting red around mid June. At first, we thought it was just some kind of allergy reaction, so we kind of just brushed it off. It started getting worse and worse so my mom decided to take me to a dermatologist to get it checked out around mid July. The dermatologist didn’t think much as well, and prescribed me some kind of ointment. I had a surfing camp at the end of that July, so after I went to see the dermatologist, I went to the surfing camp. At the surfing camp, everything started going downhill. When I got home from the camp, my eyelids were so swollen and red I could barely open my eyes. I started getting rashes on my knuckles, elbows, and neck. My quads also felt weak when I tried to walk. I later found out that sun exposure is one of the biggest triggers for Dermatomyositis, and that surfing camp with sun exposure every day was probably the last thing I should’ve done. We got referred to a doctor specializing in autoimmune diseases and immediately, I was hospitalized and started doing numerous blood tests and tests every day. I remember going around the hospital with my mom, waiting and doing every test the hospital offered. The doctors finally came to a conclusion, I had Dermatomyositis and specifically, the subtype MDA5. I was immediately put on steroids and after a few weeks of hospitalization, I was sent home. I felt very lost and confused when I was first diagnosed. I was always very healthy growing up, and suddenly being diagnosed with this disease I could barely pronounce definitely confused me. 

 

What are some challenges you have faced with Dermatomyositis and how have you overcome them?

 

Because I was on lots of medication for almost 4 years, I had a lot of side effects from those drugs. I was on steroids for around 3 years, which had the most amount of side effects. I started losing crazy amounts of hair. Every time I would wash my hair, at least one handful would fall out. I lost almost half of my hair. I also got the effects of having “moon face”. Basically, it’s this side effect of long-term steroid use where your face gets puffy. Another side effect is slowed growth. I basically never had a growth spurt since I was on steroids for such a long time. I would say now, one of the biggest challenges I face is not being able to be under the sun for too long. Like I mentioned before, sun exposure is one of the biggest triggers for a flare up, at least for me. So it’s hard when everyone around you is tanning under the sun but you can’t really since it would be a big risk in doing so. But I think after having gone through so much treatment and medication, I know that I can miss out on one beach day instead of getting sick. I think I’ve kinda found ways to adapt. For example, I might find a less sunny day to go to the beach with my friends, or I’ll put on lots of sunscreen before going out under the sun. 

 

How has your mindset now toward your condition shifted from your mindset before?

 

In the beginning, I always asked the question “why me?” I always wondered why in all these people in the world, it had to be me that was diagnosed with this weird disease. Now, I kinda feel the opposite. I'm glad out of all these people I was the one. I feel grateful that I was diagnosed. This is going to sound cringy, but I'm glad I found out I had Dermatomyositis because it's what inspired me to start Brave Together. I'm honestly glad I can hopefully help other kids and families feel supported and seen throughout their journey, instead of feeling what my family and I felt, alone and helpless. 

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Do you have a message for kids who are going through something similar?

 

Keep on fighting, because it will get better in the end no matter what. I know it feels lonely, but just know there is someone in the world going through the same thing as you. I genuinely mean this - you are not alone.

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Great, thank you so much. 

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Thank you!