Sponsored: Let Your Voice Be Heard and Help Raise Awareness of Myositis
By argenx
Living with myositis is full of challenges. From numerous doctor appointments to managing symptoms and finding a treatment that’s right for you, it can feel overwhelming at times. You do not have to feel alone in this journey; you are part of a larger community that you can lean on for support.
Sharing stories can make a difference
Each myositis journey is unique. This person living with myositis experienced a dramatic drop in her activity level, taking her from someone who was always on the move, to one with severe limitations:
“Before my diagnosis, I worked 60 to 70 hours or more a week. I was always on the go. I rarely sat still until late in the evening. As a kindergarten teacher…my days were filled with lifting and carrying heavy school supplies…. Suddenly, walking even short distances became a struggle…. Managing my condition is a constant and complex balancing act. Every day is a different day, making it difficult to plan things too far in advance. One day I can get up and walk around the block or go shopping. The next day, I can barely move from pain, fatigue, and weakness.”
There are many types of myositis, making diagnosis often difficult and frustrating. This person experienced such a long road to receiving a diagnosis that she started to question her own reality. After a successful diagnosis and treatment, she began to feel positive and hopeful again.
“About 7 years ago I started having muscle weakness, joint pain, skin rashes, weird sores on my scalp, extreme fatigue, and a mixture of other symptoms. I was going to doctor after doctor after specialist after test, while getting worse and worse. No one had answers. I was beginning to wonder if I was crazy. Finally, I found a young fellowship doctor…who ordered a multitude of tests…. After the tests came back, he called me in and told me I have a rare autoimmune disease called dermatomyositis and I have the MDA-5 gene. He immediately started me on [treatment]…. I am now walking on my own, feeling better, and I am living my best life. I still have issues, but I am able to do most of the things I did before. Maybe just a little slower and more carefully.”
Sometimes myositis symptoms can be so problematic that they’re difficult to bear. What can make it worse is when some people doubt that you are actually sick, as in this person’s story:
“I was diagnosed with dermatomyositis and interstitial lung disease (ILD) 3 years ago…. Having an autoimmune disease is challenging in many aspects. I have debilitating pain in my feet and hands, my oxygen levels drop upon exertion, the pain can be so bad I cry. It’s hard for me to stand more than 20 minutes. I'm starting to get more and more muscle pain. The sun bothers me. I get very hot all the time. I can't cool down. People will look at me and say, “What's wrong with you? You don't look sick. It’s one of the chronic, invisible diseases.”
Although myositis types and symptoms vary greatly from person to person, every shared story can help uplift the myositis community and make a difference for someone. Please consider sharing your story to help boost awareness and support others who are living with myositis.
Finding support
Here at argenx, we’re listening to your stories to build tailored support. As a global immunology company, we’re committed to developing therapies and medicines for people suffering from autoimmune diseases. That includes providing the information, support, and resources to help you in your myositis journey. Sharing your story can help us better support you and the myositis community.
US-NON-24-00236 V1 08/2024