It is against this background that Arafa Salim Said, a sickle cell disease (SCD) warrior, is dedicated to enlighten people over it. Said believes that it is important for everyone to be knowledgeable about the disease because it affects everyone in one way or the other. MARIAM SAID spoke to Arafa, and the following are excerpts from the interview:-
QUESTIONS: How would you best describe yourself?
Answer: I was born in Dar es Salaam in March 1987and did my primary school education at Olympio Primary School in Dar es Salaam. I later joined Good Samaritan Secondary School for ordinary level education, before enrolling with Learn IT for a Diploma and Advanced Diploma in Business Administration.
Q: How old were you when you found out that you had sickle cell?
A: I was diagnosed with sickle cell anemia eight months after birth.
Q: How were you able to cope with school and the condition?
A: Having to live with sickle cell anemia is difficult as life can be very challenging. I used to be sick regularly. That means I had to miss classes regularly but upon recovery, I would catch up. Generally, growing up with sickle cell anemia affects the whole range of social activities from education, relationships and employment.
Of many symptoms that torment sickle cell patients, pain is one of the most common and also stressing. Growing up, I found out that letting the disease limit me would make my life difficult, so I adopted a positive attitude, which I always shared with others.
Q: How did your childhood, condition and your parents influence you in your career choice?
A: My childhood wasn’t as easy as others’ because I had to limit myself in doing lots of stuffs in order to prevent myself from crisis. My Parents played a bigger part in my life, encouraging me with my studies and taught me to never give up.
Q: What specific activities have you been involved with?
A: I've made it my goal to do what I can to help people suffering from the disease by participating in different programmes to inspire and empower them to take action for their health; I am also a founder of an NGO that is advocating sickle cell anemia (Sickle Cell Disease Patients Community of Tanzania.) I started the organization in 2007 because I wanted to change that archaic way of thinking on sickle cell anemia. And, I am into this full time as an activist. I use the media, social media and going to different schools and other gatherings to speak about the disease.
Q: Have you noticed a difference in how your friends/coworkers treat you once they know you have SCD?
A: Some of my friends and relatives never understood me when I had to cancel something that I was really into and they would give me names like excuse maker or mamas baby. But I believe that every person’s life, regardless of condition, has equal value.
Q: Has sickle cell limited any areas of your life? How?
A: Sickle cell hasn’t limited me in any area in of my life because I take it as any other challenge in life. No one can believe that I have SCD. I am strong and perform my duties just like anyone else. Growing up, I found that letting the disease limit me would make my life difficult, so I adopted a positive attitude, which I always shared with others.
Q: Do you have regular pain? How do you cope with this when you are working?
A: It is hard to explain to someone who has no clue. It’s a daily struggle feeling sick on the inside while you look fine on the outside.
Q: How has sickle cell affected your personal life when it comes to relationships?
A: I am married to my caring and supportive husband, who stands guard at my bedside each time I am ill. He is amazing to me. We are happy and very blessed. I have no children at this moment. But I plan to have children in the future, In Shaa Allah!
Q: What has been your campaign in raising public awareness on sickle cell disease?
A: Like many other issues affecting the community sickle cell anemia could be prevented. This could be achieved through GENOTYPE TESTING which is a painless procedure that will determine if someone has this disorder or carries its Trait. It is the way of saving our children the pain, agony, complications and premature death that comes with Sickle cell anemia, there is still very low awareness about this disease, and it affects millions worldwide.
Q: Tell us something about Bold Lipstick for Sickle cell challenge
A: BOLDLIPSFORSICKLECELL Challenge is a type of campaign that was initiated by a fellow warrior from the US to help spread the sickle cell awareness.
Q: Is there anything else that you would want to tell other sickle cell warriors?
A: To my fellow warriors, I challenge you all to - ask for Gods continued blessings, He is the only one that can bring you through the many trials that you face.
• Adopt a positive attitude and know that with God’s help you can do anything you put your mind to believe in yourself.
• Believe that knowledge is indeed power and educate yourself as much as you can about the disease and your body.
• Continue to have faith and hope that a cure to this disease will be found soon, and do whatever you can to contribute to the cause.
Q: What advice would you give to someone wanting to join any profession and has sickle cell?
A: Take care of your body first. Learn how to say no and learn how to take a break. Additionally, do not use your illness as a crutch, push yourself to do more and work harder. You will have to work harder than everyone else to ensure your success despite potential pain crises.
Q: When you face obstacles in your life, what helps you through it?
A: My faith in God first! I stay prayed up and believing in him to get me through every obstacle. Then my family, husband and friends, whom I can always count on for support, help, love and strength. I am truly blessed to have a solid group of people to get me through. Obstacles can’t stop me as long as I have God and He has me.
Q: Looking at a teenager who has the same problem you are facing, what would you tell him or her if you could…?
A: Keep working hard no matter what everyone else is doing. Know that you are smart enough to accomplish anything. Guard your heart and don’t lose sight of your worth.