We are Rare, but we’ve got the Roar: Carol Nkinda and Life with Alopecia
Not every person you see shaving his or her hair is doing so to conform to fashion.
I am Carol Nkinda (46); my life has not been easy for the past 20 years due to a condition that at first, no one could understand.
I have spent years moving from one doctor to the next, leaving each one with another diagnosis, different from the one before.
My sigh of relief 3 years ago after my correct diagnosis was short-lived when I was informed that I had an incurable skin condition known as Alopecia.
Alopecia is an autoimmune condition where the immune system mistakenly fights its own cells causing sores to erupt on the skin and at times, it may result in hair loss. The person’s skin is extremely sensitive and when in contact with other surfaces, it is prone to react with irritations. This has been the case for me for the last 20 years.
I have been forced to shave my head bald due to hair loss and the wounds on my scalp. Being a woman, my hair held a great deal of importance for me. People have laughed at me often and were seen pointing at me whenever I pass through the streets. Others have kept far from me as they think it is an effect of chemotherapy, thus alluding that I have cancer. I believe that the discrimination I have experienced is due to ignorance, people just do not understand my condition.
My condition has termed me as “weird” by my community. As I said, if my skin gets in contact with any surface, I will break out in sores and the wounds may take up to 2-3 weeks to heal. Due to this prolonged healing process, I visit the hospital almost daily and I have sores all over my body.
The biggest challenge I face is figuring out how to relieve some of the negative effects of my condition. For example, to avoid clothes that make irritating contact with my body, such as elastic pants and bras. At times, I cannot use public spaces and facilities because friction with the crowd would cause more sores. This has led to me keeping to myself, though I do try to educate the people around me as to why I cannot do some things. However, although some believe me, others write me off as being a “loner”.
Due to the pain and discrimination, I have experienced with alopecia, I have come out to champion the rights, better treatment and understanding of persons with alopecia and other rare conditions.
I realized that if I kept information about my condition to myself then no one would ever understand it, others, or me with this condition. I must speak about my experiences and share my story, if not, the discrimination will continue.
Driven by the rare condition theme “we are rare but we’ve got the roar”, I believe it is time we let other people know what we go through and how they ought to treat us.
Forums such as this one on the rare disease day organized by Positive Exposure-Kenya with support from Making More Health, Boehringer Ingelheim will go a long way in helping people understand different rare conditions better and even accept themselves and their own conditions. I encourage that during the other forums; we bring on board people with different conditions and create a space where people without rare conditions can come and understand us better.