Dermatomyositis Awareness Month: Surviving a Rare Disease- Celebration of Life

Lashaun Turner

This month we celebrate the lives of those who have been affected by Dermatomyositis and remember the strength and courage they have shown in facing this disease.
Lashaun Turner: Black Face of DermatomyositisPhoto byLashaun Turner @MsLashaunTurner on Twitter

May is Dermatomyositis Awareness Month, a time to raise awareness of this rare autoimmune disease that affects the skin and muscles.

Dermatomyositis can cause a variety of symptoms, including muscle weakness, trouble talking or swallowing, skin rash, and fatigue.

There is no cure for dermatomyositis, but there are treatments that can help manage the symptoms. Please speak to your Rheumatologist and other professionals for a treatment plan tailored to your situation.

In the United States, approximately 5-10 in 1 million people are affected and the incidence appears to be increasing. (Dermatomyositis) may appear at any age but most commonly from age 40-60 in adulthood; in childhood 5-15. The female to male ratio is 2:1. Source Physiopedia

Surviving a Rare Disease

I want to use my story to raise awareness about Dermatomyositis and rare disorders. I want people to know that there are people out here who are fighting these diseases, and that there is hope.

I was formally diagnosed with Dermatomyositis in January of 2022 after 4 months of a disfiguring rash, and, waking up one day not able to control my arms and torso due to weakness.

It was a devastating diagnosis. Read more about my journey at Myositis Awareness: 'Black Face' of Dermatomyositis.
Lashaun Turner with Rash of DermatomyoitisPhoto byLashaun Turner @MsLashaunTurner on Twitter

I’ve since undergone a lot of treatment, and it’s been tough. After almost 18 months, I’ve started to feel much better. I have recently started living my life again. I'm still not 100%, but I'm doing much better than I was when I was first diagnosed.

The rash subsided and I am able to walk without assistance. I suffered some permanent muscle weakness but I am able to do most things.

There is ongoing research and clinical trials for Dermatomyositis sufferers. I am personally participating in a 23andMe genetic study.

For those interested in learning more, the Myositis Association will hold a virtual summit May 20, 2023, providing information, encouragement, and the latest research. The summit is open to patients, caregivers, and providers.

Here are some tips for celebrating life during and after a diagnosis of Dermatomyositis

  • Acknowledge your feelings. It's okay to feel scared, angry, or sad. Allow yourself to grieve the loss of your old life and celebrate the new one you're building.
  • Talk to someone you trust. Talking about your experience can help you to process your emotions and make sense of what happened.
  • Find ways to cope with stress. Exercise as much as possible, relaxation techniques, and spending time with loved ones can help you to manage stress and anxiety.
  • Set goals for yourself. Having something to work towards can give you a sense of purpose and motivation.
  • Celebrate your milestones. No matter how small, take the time to celebrate your progress. This will help you to stay positive and motivated.

Surviving a medical scare can be a life-changing experience. It can teach you to appreciate the little things in life and to live each day to the fullest. It can also make you stronger and more resilient. If you're going through a medical scare, know that you're not alone and that you can get through this.

If you or someone you know has dermatomyositis, there are resources available to help. The American Autoimmune Related Diseases Association (AARDA) has a wealth of information on its website, including information about symptoms, treatments, and support groups.

You can also find information and support on the websites of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and the Myositis Association.

There is also a Facebook group, which I have found very helpful and would also recommend.

**This is a work of nonfiction based on actual events that I have experienced firsthand**

This is original content from NewsBreak’s Creator Program. Join today to publish and share your own content.

Comments / 1

Published by

Lashaun is a Journalist whose column covers Black Political Opinion, Local stories and the I.E Food Tour, with NEWSBREAK since June 2021.- JADED: Journalism with a Touch of Shade is Lashaun's views and opinions on various trending topics. Lashaun aka Lady I.M.PRE$S is a former NBC/CNBC Affiliate KCAA Broadcaster for "Cali's BEST" Radio Show airing on 102.3FM & 106.5FM from 2016-2020. Lashaun has been in the Media & P.R field for over 13 years and has interviewed an estimated 20k Celebrities and Entrepreneurs. Lashaun also produced & hosted Blaze Indie L.A TV show on LA's Channel 36 from 2014-2016"

Los Angeles, CA

More from Lashaun Turner

Comments / 0