“Do not complain, never whine, make every effort to change the things you do not like, and do not die without having done something wonderful for humanity.” – Maya Angelou
My name is Arafa Salim Said, I am the fourth child in a family of seven. I was diagnosed with sickle cell disease at the tender age of eight months and I have been an outright warrior ever since.
Sickle cell disease is a severe hereditary form of anaemia which mutates haemoglobin and distorts the red blood cells into a crescent shape. This reduces the oxgygen levels in the red blood cells. The disease causes headaches, dizziness, jaundice and shortness of breadth. Patients also get severe pain through out the body which can affect their bones, lungs, abdomen, and joints.
As I grew older living with this disease, I realized there was an immense information gap about Sickle Cell Disease in Tanzania. There has been a lot of misleading information about the origins and the spreading of the disease. Some people have referred to sickle cell as a curse cast upon me by a witch. This lack of information led me to founding the Sickle Cell Disease Patients Community Of Tanzania. Through this community, I aim to: raise awareness, dispel the stigma associated with the disease, build confidence among sickle cell patients, and provide general support.
I am a big believer in giving back to the community and have invested over 5 years of my life
to the Sickle Cell Disease Patients Community Of Tanzania. I have used this platform to crusade against the misinterpretation and misinformation that exists around sickle cell disease. When I am not advocating for Sickle Cell Disease, I like spending my time playing with the children suffering from the disease, and supporting their caregivers.
Growing up, I found that letting the disease limit and control me would make life difficult, so I adopted a positive attitude. As I look into the future, I don’t feel sorry for myself and I see sickle cell as just another challenge in life no different than any other trial people face.
I became a ONE member on the 15th of May 2015, because I am passionate about issues that affect different people, this time it was to stand up for girls and women everywhere. Since joining ONE, I have passed the message to my fellow sisters and brothers to join the campaign and add their voices to demand better conditions for women and girls everywhere.
In my view, women in Tanzania are generally poorer than men and have a lot of decisions made on their behalf. A lot of young girls fall pregnant and many are married at a very young age. We need more information to be given to young girls and the government needs to support both young pregnant girls and poor women so that they are not vulnerable. We want to be engaged on the problems our communities face as well as to be part of the solutions and their implementation.
The road has been long and winding, but through the grace and mercy of the good Lord, I am here to give my testimony. Here I stand ready, willing and able to make difference.
Please stand with me, girls and women everywhere, by signing the Poverty is Sexist petition.
