Fighting a 1 in 100 000 Disease: My Journey with Dermatomyositis and Unshakeable Faith

My name is Yuvti Rampersad. I am a dentist by profession. At the age of 27 I was suddenly diagnosed with a rare autoimmune disease called Dermatomyositis. 

Doctors cannot pinpoint what causes dermatomyositis and there is very little medical research on it. I went from not being able to lift my hands above my head to being unable to walk within the span of a week. This disease is so rare that it is estimated that 1 in 100 000 people will have it. 

Dr. Rampersad

Dermatomyositis happens when your immune system starts to attack your own muscles. This results in severe muscle breakdown, immense pain and difficulty in performing daily tasks like standing up or sitting, climbing chairs or performing simple tasks and can lead to permanent immobility.

It can affect all and any muscles of the body including the heart, lungs and throat and comes with an itchy rash on the chest, hands, eyelids, scalp, arthritis and is often associated with other autoimmune diseases as well as a higher chance of developing cancer than the normal population.

There is no cure for dermatomyositis, and it is treated with life-long immunosuppressant therapy and corticosteroids. Those who lose their lives from dermatomyositis, do so because of developing cancer, interstitial lung disease or ischaemic heart failure.

As the nature of the disease is so rare, there is not many new therapies that have been developed to treat dermatomyositis and as a result medical aids in South Africa have given very little assistance to helping me pay for my treatments. It has been a long and difficult road trying many different medications that have changed my body, mind and psyche and few that have helped adequately. Not only do the medications make your body unrecognisable to you but there is hair fall, depression and the grogginess and confusion that comes from having to take more than 15 tablets a day just to survive.

On a good day. Not forgetting the doctors' appointments, drips, hospital visits and painful grueling tests that are ongoing or the exhaustion of having to explain to even doctors and nurses what dermatomyositis is because that is how rare and poorly recognized this disease is. 

But the reason you are reading my story today is because despite the setbacks, most recent hospital visits and difficulties in my life, it is a success story. I am now 30 years old, still practicing happily as a dentist despite having multiple flares in the past three years and having many near death experiences at such a young age. It hasn't been easy.

The problem with autoimmune disease is that it looks so silent. It is confusing to look at a 30-year-old person who appears healthy outwardly but inside there is a raging battle between their minds and their muscles just to stand up from a chair.

How did I do it? And how am I still doing it? The answer to that is: prayer, faith and family. "A faith that is not tested and tried is no faith" - Sri Swami Sivananda Saraswathi. 

I am daily still learning to live my life with Dermatomyositis but the love, support and kindness that my parents have showered on me has been the true measure of the capacity of the human heart to love unconditionally.

Love comes to us in many forms and my advice to anyone going through a difficulty right now or struggling from autoimmune disease that feels like it is never ending; is to focus on the loves in your life. Be it from a pet, a family member, a hobby but most importantly the love you give to yourself. Take this year as one to be kinder to yourself and to those around you. Remember no one's journey is the same so dont compare your healing to others.

I hope that my story gives you the courage to make the difficult decisions and stand up for yourself even when it feels like standing up is impossibly hard. I aim to continue serving others and hope one day to have an Instagram support page for others living with autoimmune disease.

I owe my life to my divine master Sri Swami Sivananda Maharaj who lived his life in the service of others and it is my hope to do so till my last breath. My pillars of strength and the people I owe all my life to for their support are two angels walking this earth Rajesh and Mala.

I am grateful for your effortless love and support mum and dad and it is my dream to serve you both forever. I hope that this story reaches you at a time when you need it the most and in that I have done my service to you.

My gratitude goes to my rheumatologist Dr Sanvir Sirriram for his light love and guidance; may God continue to work through you as you heal me and others.

With Prem and Om, light and love Yuvti