When I was diagnosed
with sickle cell disease in 2002, I knew my life was going to end in few
months. Two years I decided that sickle cell wasn’t going to take over my life
and I would have to find a way to do something positive and constructive while
spreading awareness of sickle cell disease.
Moving to Facebook,
Twitter, blog and Google Plus has given me an opportunity to meet people from
all over the world who are trying to spread awareness, an opportunity to share
information with people currently living in places where information about sickle
cell is not readily available.
Long before, speaking
about sickle cell disease and its mother – sickle cell trait was a taboo in our
society. It was a shameful act for someone to declare publically that he/she
has sickle cell disease.
When I joined the social media in 2010 it was
difficult to see anyone share information about sickle cell on their Facebook
wall/timeline or tweet about sickle cell in Uganda. When I started to advocate
for people living with sickle cell it was sacrilegious but I knew my mission in
life.
Handling the microphone
for the silent majority and acting as a voice for the voiceless was my mission.
I realized that
knowledge is power, so my mission to empower everyone to understand the art and
science of helping people with sickle cell get better, and help them regain
control and get back to life. That’s the invisible hand behind the birth of
Sickle Cell Network Uganda.
I am an advocate of
people living with sickle cell disease and those who have sickle cell trait but
experience the pain which is worse than sickle cell pain. I share my
inspirational story of courage and humour about my battle with sickle cell
trait pain which is rare.
The wall of my world
gradually closed in over the years as the trait ravaged my life. Living with
any chronic incurable disease isn’t easy. I share with my audiences the
inspirations and lessons I have learnt along the uneven path to better health.
We can learn valuable
lessons from challenging life events and emerge stronger. It is time to allow
those dealing with sickle cell disease and trait with pain, the freedom to come
out and share openly with others. We don’t have to be embarrassed or ashamed
because we have sickle cell disease or the trait.
I try to change lives.
Sickle cell disease activism is my everyday routine which I wake up thinking
about. My mission is helping people realize that they are not the only one that
have sickle cell, so they should not suffer alone in silence. Only since then I
have raised awareness to stamp out sickle cell stigma because I care.
I work tirelessly and
around the clock to help people. I am an advocate and I have done this on my
own. I have a passion to see no one being defined by sickle cell and no child
being born with sickle cell disease.
It is estimated that
over 7 million Ugandans carry the sickle cell gene yet majority are unaware of
their risky condition.
I often wondered if I am
crazy to think I can change the world but something deep inside me tells me
that this is what I am supposed to do.
Thanks to all my
amazing followers, my dedication is even better than I dreamed.
If you love my work please endorse for WEGO health Activism awards. Follow this link to endorse.
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