Brianna Childs

May 2, 2024May 18, 2024 Category: Patient Stories

Myositis Awareness Month is a time to tell the story of your myositis journey. Here are some sample questions everyone can use to prompt your thoughts about how myositis has affected your life. Then you can go out and tell the world what myositis is and how it affects you!

Thanks to TMA member Brianna Childs for sharing her journey in this way with us.

• What is a fun fact about you, that has nothing to do with myositis?

Anyone who knows me knows that I am a huge animal lover. I have a 10-year-old cat whose name is Leah. She is the sweetest cat ever. I also love seeing people walk their dogs while I’m out and almost always stop to ask if I can say, “Hi.” Animals bring me so much joy and happiness.

• What is your most useful hint, hack, or tip for navigating daily life with dermatomyositis? Do you have a specific self-care practice or resource that you recommend to others?

Living with dermatomyositis is living life in hard mode. It’s a constant battle of balancing being productive enough to not let my disease control my life and listening to my body to not push myself too much because I will regret it later. I do my best to take one day at a time and rest when I can and be realistic when scheduling plans, giving my body enough time to recover.

• What was your first myositis symptom?

I was diagnosed with dermatomyositis in April of 2019. My first symptom was my fingers turning blue/purple and white when I was out in the cold. I learned very quickly that I had Raynaud’s syndrome. Then I had a horrible cough for months that I thought was just viral, which led me to start getting tested to see what was going on. My health declined rapidly within a month’s time while I was still working as a medical assistant. I first noticed I had a difficult time climbing stairs; my legs felt like a thousand pounds. I also had severe muscle and body aches with a low-grade fever. I couldn’t understand why it was getting so difficult for me to do daily activities. I had a variety of different blood tests done and soon found out my CPK level (creatine phosphokinase) was over 10,000 (normal is 10-120 mcg/l), which indicated I had significant muscle inflammation.

• How long did it take you to receive an accurate diagnosis?

I was one of the lucky ones and was able to be diagnosed very quickly. It took less than a month to get an answer. After my blood work came back with a high CPK level, I was able to get a muscle biopsy done on my left thigh for an official diagnosis.

• How has myositis affected your life?

This disease has changed my life forever. I used to be a healthy low maintenance person who would only go to the doctor for yearly checkups. Now I take multiple medications every day, have IVIG infusions every four weeks at home and I’m always at the doctor. As much as this disease has taken away from me, I have also gained a lot of positive things. This disease has given me a new outlook on life and given me the opportunity to meet some incredible people. I have learned to appreciate the little things in life and not sweat the small stuff.

• How has your family supported you on your myositis journey?

My mom has been my biggest supporter since being diagnosed. She is one of the few people in my life who truly understands what I’m going through without having the disease herself. She is always concerned about my health and well-being. She also stays up to date on the latest research and news regarding myositis. I am very lucky and grateful to have her in my life, she really is the best mom.

• How does your care team of doctors, specialists, infusion providers, etc. help you manage your disease?

Currently I am only on one medication for my myositis, which is monthly IVIG (Gammagard) infusions over a 2-day period for four hours each day. I discontinued CellCept last March and have been doing well since (knock on wood). I was on steroids for about the first two years after being diagnosed and haven’t been on them since. I see my rheumatologist every three months for my blood work, making sure my levels are still in a good range.

• What is one thing you wish every medical student knew about myosotis before they enter practice as a physician?

I wish medical students were more aware of all the resources that are available to patients with myositis. Since it is a rare disease, it’s very scary and intimating googling the disease on your own. It’s nice to know there are resources like TMA’s website that are available for people going through this journey.

• How has TMA been helpful to you and your family?

The TMA is a wonderful resource to anyone affected by myositis. The organization has given me hope and understanding of this disease. The website is a wonderful tool for learning and connecting with other people. The annual conference is also the most amazing thing ever, and I’m so grateful that TMA hosts one every September.

• What words of encouragement do you want to share with others who have forms of myositis?

Having any form of myositis at any age is scary and can feel very lonely. Thankfully we have plenty of resources to help us on our journey. I would recommend anyone with this disease or if they know someone who has it to join a support group. I am part of a few different ones on Facebook, and they have been incredibly helpful and comforting to know I am not alone.