My name is Cawden Muchinjiko (32yrs) from South Africa, I was diagnosed with PolyMyositis syndrone in September of 2017. Over the past 3 years I have experienced the emotional, physical and financial toll this disease has not only on the patient but the family as well. Earlier this month I attended my first of what I hope to be many (The Myositis Association) TMA Annual Conference. It was an emotional and amazing experience. After meeting many people from different backgrounds I decided I wanted all people who are suffering from myositis to have access to the same assistance and awareness I have regarding this chronic illness through creation of an Awareness Foundation for Myositis Africa set for launch in mid April 2019.
What is Myositis?
Myositis is a general description for chronic, progressive inflammation of the muscles. Some types of myositis are associated with skin rashes.
This rare disease can be difficult to diagnose, and the cause is sometimes unknown. Symptoms can appear rapidly or gradually over time. Primary symptoms may include muscle pain and soreness, fatigue, trouble swallowing, and difficulty breathing.
In the United States, there are an estimated 1,600 to 3,200 new cases per year and 50,000 to 75,000 people living with myositis.
Myositis can affect both children and adults. With the exception of one type of myositis, women are more likely to be affected by this disease than men.
Types of myositis
The five types of myositis are:
- inclusion-body myositis
- juvenile myositis
- toxic myositis
I want to raise not only awareness but money that will be used to build ramps and modify homes, allow those who financially struggle be able to get motorized wheelchairs and handicap vehicles. I would also increase the work with the The Myositis Association and related health departments in my country to have regulations that will allow all disabled people to travel.
The donated funds will also be channeled on creating:
- Educational & Intercative Website/Mobisite
- Local Toll-free line subscription
- Booklets, Leaflets, Newsletter Printouts
- FAQ’s for School, Libraries & hospital
- Reference Guide
Get involved in the creation of an Awareness Foundation for Myositis Africa set for launch in mid April 2019. Your donation will help educate, empower and further medicate the Myositis community.