Dermatomyositis patient: Woman's journey with an uncommon skin and muscle disease

Toni Thompson's shares her amazing story of resilience on the path to her dermatomyositis disease diagnosis at Marshfield Clinic Health System. Up until the spring of 2021, Toni Thompson lived an active lifestyle. She enjoyed physical activity, playing catch with her son, and going on frequent adventures near her home in Eagle River, Wisconsin. But in subsequent weeks, her condition only worsened. Soon, her core muscles and legs were frequently tired, and she simply didn’t have the energy she used to. She felt exhausted after completing simple chores and had to rest frequently to make it through the day. What came next was a long road for Toni - trying to find a diagnosis for this rare disease.

[@angzkidz]

I'm so proud to say that this amazingly strong and motivated woman is MY SISTER! You really truly are an amazing inspiration 💖 I love you so much!

[@britnit8816]

I've cried through this whole video. I want to help ppl with this as well. I've been diagnosed with Dermatomyositis this month may it started in March 2024. I finally got to where I could barely walk and now im just waiting on treatment. God bless you and your strength 💪

[@oOWELLZYOo]

My dad is in the hospital currently, they think he has Dermatomyositis. He cycled most days and was very fit. We planed to cycle UK together at the end of this month but suddenly this has happened. He can no longer eat or drink and can barely raise his arms. I hope you are coping well with everything it’s very difficult. Thoughts are with you.

[@bittyboowalks-sk7hs]

Prayers for you all 🙏 I was diagnosed back in December 2020 after being active & working but ended up on disability. I have been able to get some strength back from getting good exercise, protein & had success with Xeljanz & IVIG infusions. Hope you all are able to get the care you need. She is right; staying positive is key.

[@FredyLopez-y8k]

My mother is struggling with this awful disease! Prayers going y’all’s way. 🙏🏽

[@LindaBigger]

Thank you for sharing your story. I was diagnosed with dermatomyositis in 2019. I had an itchy rash on my scalp, the back of my neck, and my right arm. I also had some weakness and difficulty swallowing. After a course of prednisone did not clear up the rash my dermatologist took a skin biopsy which came back positive for dermatomyositis. I was falling and couldn't get up or brace myself because I was so weak. I also had difficulty swallowing. I was put on a high dose of prednisone and a slow taper over a course of 8 months and slowly got my strength back. Anytime I have any stress to the body get a flare-up. I had a total knee replacement a couple of months ago and had a flare-up that prednisone didn't help so I'm getting IVIG infusions. The fatigue, shortness of breath, and muscle weakness can be discouraging but my faith helps me through those times.

[@FredyLopez-y8k]

My mother is currently struggling with this awful disease. Prayers going y’all’s way. 🙏🏽

[@cosmiccharlie8294]

There is something that should be discussed but our medical professionals dare not.

[@javeriayunus4642]

I hope i also come out of this dark tunnel called dermatomyositis

[@FredyLopez-y8k]

My mother is currently struggling with this awful disease. Prayers going y’all’s way. 🙏🏽

[@egeegee7146]

And may we ask what caused it. Because something causes it. And if we know this we can turn it around and or stop it in the first place. Go Functional Go functional. Because anything that upsets the immune system and sets of inflammatory cycles has to be identified and corrected. Avoid iatrogenic medical procedures.

[@scroll_serpent]

beautiful video. thanks for posting