SICKLE CELL ADVOCACY: NOW OR NEVER

SICKLE CELL ADVOCACY: NOW OR NEVER

I think i have to sit again and write my book again FROM NOON TO NOON: LIFE AND STRUGGLE WITH #SICKLECELL hit a snag after the demise of my co-author. I need to get a a new storyline. When i write these articles about #sicklecell i think they cannot be kept for long. Am going to write a memoir book on life with #sicklecell and the daily management in #Uganda. Sickle cell activism is one of the hardest things in Uganda its more difficult than opposing the government in Uganda. You get in a situation where the people you want to see enjoy their rights in everyday life, in hospitals put stickers with words "DO NOT DISTURB" they think they are supposed to be treated as "abnormal". Most people with sickle cell look at themselves as inferior. As activists we are faced with two hurdles:
1. To change the mindset of people who live with sickle cell to think that they are normal, have rights and do not have to to look for sympathy but empathy
2. To change the peoples' thinking and understand that to live with sickle cell is not a death sentence and those people can live a productive life. That people with sickle cell need to be empathised with not sympathised.

I cannot forget what Philly Bongole Lutaaya said in 1989 when he was declaring that he was HIV positive.
"Stigma is caused by ignorance. People are so afraid and it is natural. Do not blame anyone who keeps away from you, just educate them to love and care for the sick"

I have realised that with my blog, (MY REAR WINDOW: THE RIGHT PERSPECTIVE.www.ashirafworld.blogspot.com), the Facebook account i have managed for yearsSicklecell Drive Uganda, and the numerous article i have been writing may not be enough to bring out the right perspective of sickle cell in Uganda.

So before the end of this year i have to see that my book is ready for publication or published inshallah and the new platform for advocacy; that's the new organisation Sicklecell Network Uganda should start changing peoples lives.
Its my responsibility, its your responsibility its Our responsibility.