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

[@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. 🙏🏽

[@mollyg8605]

I was diagnosed with this disease as a child. I was very active and played football with the boys during recess. Then all of a sudden my muscles got so weak I couldn't get up off the ground. It was so hard watching kids play while I was in a wheelchair. Over the years of treatment in and out of hospitals my parents get divorced, my twin brother decided to begin drugs and slowly be out of my life and all my friends went there own way. At this point as a child I thought about committing suicide but in the end I made it. My disease is in remission, my parents are happy, my brother is off drugs and has a good job now.

[@juantirado2084]

God bless you, my dear🩷🩷 many many prayers go out to you and your family, cause family is a very huge part, and they deal with this as well.

[@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!

[@heyokaempath5802]

I hope she is still doing well!

[@juantirado2084]

Hello! My name is juan and i have a question? Does your sister know of any organizations that help with understanding dermatomyositis? I've been dealing with these issues for about 3 years, and last march, i was finally diagnosed. I've been put on immunosuppressant, which is not work, and I'm down to 115lbs. My normal weight is 160. The health care companies have failed me, and I'm on my last leg of just giving up until I found this story on KZbin by some weird chance. I'm from NY, I live in Southampton, NY, and the medical system here sucks and clueless!! It's all about money here, and that's a shame😢 im desperate for help.

[@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. 🙏🏽

[@FredyLopez-y8k]

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

[@scroll_serpent]

beautiful video. thanks for posting

[@cosmiccharlie8294]

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

[@khushigandhi2211]

My brother was recently diagnosed with the same disease is there any way you I could talk to a patient and know about his/her experiences which might help in my brother's treatment.

[@sunnysidebirding]

My mother was recently diagnosed, I know this is a long-shot, but is there any way you would be willing to speak with us? Thank you so much- let me know if know if you would be willing to have a chat.

[@MarshfieldClinic]

Hi @sunnysidebirding, Are you wanting to talk to the patient, Toni, or to a doctor? -Sincerely, Jordan

[@heyokaempath5802]

My dermatomyositis started about 10 years ago. Ive suffered through doctors struggling to figure this out. I can't walk, i am in so much pain that im getting screened for cancer. I asked my dr why she cant look at fixing the dermatomyositis and she said that because of my heart condition, i cant take prednisone or any steroid. There is no cure, so i guess they arent in any rush? I can barely get out of bed somedays.

[@javeriayunus4642]

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

[@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.

[@alfredwilliams3176]

I don't reckon the multiple jabbed will understand what you are hinting at...

[@egeegee7146]

@@alfredwilliams3176 true enough but...