10 YEARS OF MY SICKLE CELL ACTIVISM

This years i celebrate 10 years of Sickle cell activism. I started sickle cell activism in 2004 when i had just turned 14 years. Though the first part of my 10 years was about fighting abuses and discrimination against me but it was the foundation to what i do now. You can not fight for other people's rights when you are under oppression. It was hard to start i did not have any reliable source of information. The first information piece of information about sickle cell i got it from a doctor, Dr. Mulokola who owned a Clinic called Allied Clinic at Elgin Road Masaka. Though he explained to when i was in pain but what i can remember are two statements; you have to take folic acid everyday and sickle cell has no cure. The second piece of information i got it from a newspaper article which was given to my mother by someone i did not know. This article was in The New Vision and gave the facts about SCD, what causes it, signs and symptoms, treatment and what to do to stay well. What i did was to get a pen and a piece of paper transcribed whatever was in article and got my own copy. I STILL HAVE THAT COPY AFTER 10 YEARS

Image of transcribed article in 2004

Its this little information that helped me to launch a lone struggle. The first person to test whether the information i had received was of any use was a girl in my class (S2 G) who shouted on top of her voice that i had sickle cell. Because i had sickle cell she wanted to tell everyone that a person with sickle cell disease is not supposed to speak when "normal" people speak. I went straight to her and and warned her against discriminating against me. I did not get anyone after that incidence using sickle cell to demean me. Though the battles with teachers started until my last day in Secondary school in 2008. I started writing about the injustices committed to people with sickle cell in 2007 though my work remained on paper and was never published.

In my first year at the University i joined a number of online sickle cell awareness platforms, People living with sickle cell disease created by Ade Dot a Ning group was my maiden group. I later joined more groups and pages like Sickle cell Soldier Network of the late Phyllis Zachary Thomas and Sickle Cell Warrior of Ola Tosin.

Later in 2010 i opened my first Facebook account for Sickle cell awareness; Sickle Sicklecell Drive Uganda. Also my first work was published by The Daily Monitor. Currently i write when there is a need. And i also write for African Sickle Cell News and World Report in Nigeria.

10 Years now i have a number of social media dedicated for sickle cell awareness, i have Facebook, Twitter, Blog. 

After 10 years of activism and 5 years of online activism i was nominated in Wego Health Activism Awards in 4 categories categories;

1. Best Kept Secret Award
2. Best in Show Twitter
3. Best in Show Facebook
4. Best in Show Blog

You can vote me following this link https://awards.wegohealth.com/nominees/789

Am also no longer a freelancing activist like one head of sickle cell organisation told when i declined an offer to work with her organization am now with Sickle Cell Network Uganda.

Using my 10 years experience in activism i decided to write a book which portrays a clear perspective of living with sickle cell disease in Uganda. The book is called Midnight Tears Dry and shall be out soon.

10 years has not been a smooth ride but there has been hurdles and at times bigger hurdles.

I cannot forget to give a special mention to my friend who helped me to be firm and continue with this activism, Patricia Akoth May her soul rest in peace.

I can sum-up my ten years as years of "PAIN, PURPOSE, PERSEVERANCE AND STRUGGLE"

I thank Allah for seeing me though. Alhamudulilah