Celebrating World Myositis Day: Myositis Africa

September 21, 2024September 30, 2024 Category: Patient Stories

My name is Cynthia Ikediashi. I reside in Lagos, Nigeria. Early in 2009, while in my third year at the university, I started experiencing weakness in my arms, thighs, and legs accompanied by extreme tiredness, which happened to be my very first symptom. Before the middle of the year, I was able to get an accurate diagnosis after being referred to a rheumatologist and was told I have a rare autoimmune condition called dermatomyositis. 

Everything changed for me after that. It was my first time hearing of this disease, and it looked like I was the only one in my country diagnosed with dermatomyositis. After spending weeks in the hospital, I was able to go back to school and eventually graduated.

Due to how rare myositis is in my country and how inadequate medical services are, it is quite difficult going about activities. Getting employment, even on a part time basis, is hard. Thanks to my immediate family, who have been very supportive of me, I’m still able to pull through.

My medical team is also very supportive and always ready to see that I am well taken care of and comfortable. I wish every medical student would have an idea of myositis and rheumatology, because so many doctors in my country don’t know about this disease.

TMA has really been helpful because I got to meet and interact with other myositis warriors through TMA’s Women of Color Affinity Group, which made me understand that I was not alone in this. I and another Nigerian woman, Eniyome Onoviran, started the TMA Myositis Africa Support Group after meeting the Women of Color Affinity Group leaders. They have been very supportive. Eniyomen and I are now coleaders of Myositis Africa.

The TMA Myositis Africa Support Group held its very first zoom meeting on April 11, 2023. The number of people joining each month varies from time to time because of unstable internet network. Some of us also find it difficult to attend because of language barriers. We depend on mobile phone networks since we don’t have Wi-Fi. Five or six of us attend regularly though.

Right now, Myositis Africa has people from Nigeria, Zambia, South Africa, and a Nigerian resident in London in our group. We hold our monthly zoom meetings on the second Tuesday of every month. Anyone from around the world is welcome to join these meetings. Please use this link to register.

Some of the challenges we face are the delay in getting the right diagnosis, because very few doctors have an idea of what myositis is. We do not have enough rheumatologists in Africa, and some countries don’t have any rheumatologists at all. Many doctors think we are making all these things up or maybe it’s a spiritual attack.

Even when we get the right diagnosis, many of us find it hard to keep up with the medical bills as we don’t have any insurance coverage. The Myositis Africa Support Group tries to bring us all together as a strong support system, so we are able to advocate for ourselves and others knowing we are not alone and that this is not some strange disease. We hope to bring more awareness to the general public and encourage other myositis warriors that we can beat this.

I would love to encourage others who have been diagnosed with any form of myositis to be positive, stay strong, and never give up. We will surely beat this.

Learn more about the origins of TMA Myositis Africa in our story about the first five years of TMA Myositis Women of Color Affinity Group. 

Support for global patient stories provided by Bristol-Myers Squibb.