In the rare disease space, we cannot underestimate the importance of international collaboration and linkages. For people living with a rare disease, reaching out to others based in another country is not rare and is essential to finding communities they can connect with and relate to. The following story illustrates how technology is playing a pivotal role in people from one side of the world being able to communicate with others on the other side of the globe.
Growing up in Sub-Saharan Africa, Zimbabwe, my family and society had convinced me to believe that I was cursed by ancestral gods, in my mother’s womb. I learnt to accept that I was a black sheep, an ugly smelling duckling who will die an outcast. Well, just about a year or so ago, I came across a Facebook page – Living with IA – that liberated me from the psychological prison I was in all my life. It was consoling and comforting to learn that there are other folks out there who were born with my exact same condition, some even with worse case scenarios.
IA is an acronym for Imperforate Anus – an extremely rare condition in Africa. In layman language, it means being born with no anal opening. Since birth, I have had difficulties in going to the toilet, which is something that has affected my academic, social and economic life. I have had to fight the ailment psychologically from within although, it has been hard to mix and mingle with different people. Discrimination while growing up as a child going to school was very difficult.
Due to the faecal incontinence caused by IA, I did not know, or could not control when stools would come, so I had frequent accidents (messing and soiling myself). As a result, I was always smelly, which caused me to be anti-social. Often, I would have to change my undergarments and I had no one to confide in or understand what I was going through at that time. I had no friends and other pupils used to call me all sorts of names. I remember they nicknamed me, ‘stinking guy’. I was the last person people wanted to sit with in class.
In my adult life, I was forced to endure another surgery in 1997 to enlarge my anal opening. I have had three surgeries so far, the last being in 1997. The more I grew up, the more pain I endured, and the more the hassle of going to the loo. On average, I could be in the toilet for about 30 to 45 minutes battling, struggling and at times, failing to defecate. This, at the end of the day, meant that most of my private time would be spent on the toilet seat, which really impacted me negatively socially, emotionally and academically.
Generally, people in African society and those who suffer from such ailments believe that it is a result of witchcraft and evil spirits. I have also discovered that people who suffer from such rare diseases and disabilities lack the communication and education to open up about their medical problems. Many do not have access to information and because such rare ailments lack exposure, those affected tend to remain silent and die quietly. Rare diseases only affect a small amount of people unlike HIV and AIDS, cancer, cholera and malaria. More resources and media exposure are given to the diseases that affect the masses, but this phenomenon HAS to change. There is need for dissemination of information to people who are marginalised and are in rural communities.
To fill this gap, I have successfully registered a non-profit organisation called the Rare Diseases & Disabilities Africa (RaDDA) Foundation. In addition, the Government of Zimbabwe, through its Ministry of Health & Childcare is currently drafting a Memorandum Of Understanding between them and the RaDDA Foundation to support this cause and recognise Rare Disease Day officially in the country.
In no time ‘rare will not be so rare’. I appeal to prospective, potential and strategic partners/donors/well-wishers to not hesitate to contact me via email: firstname.lastname@example.org