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 – is in layman language,
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
Growing up as a child, going to
school was very difficult. Due to
the fecal incontinence caused by
IA, I did not know, or could not
control when stool would come,
so I had frequent accidents
(messing and soiling myself). As
a result, I was always smelly
which caused me to be antisocial.
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.
As for 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 30-45 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 our society
and those who suffer from such
ailments believe that it is a result
of witchcraft, 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,
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 such people
who are marginalized and are in
rural communities.
To fill this gap, I have successfully
registered a non-profit organization
called the Rare Diseases &
Disabilities Africa Foundation
(RaDDA). In addition, the Government
of Zimbabwe through its
Ministry of Health & Child Care
recently released a Memorandum
Of Understanding between them
and RaDDA Foundation to support
this cause and recognize
Rare Disease Day officially
in the country.
In No Time “RARE
WILL NOT BE SO
RARE”.
Tino Mudarikwa is the founder of Rare
Diseases and Disabilities
Africa Foundation —
www.facebook.com/radda.founda��on
www.twi��er.com/raddafounda��on
Interna��onal Pain Founda��on—49
/radda.founda
/www.twi
