NOTE: This Discussion is Based on owner’s true story and daily life experience about Sickle Cell. Wesibadde Safina is a final year student at IUIU’s Kampala Campus doing BSWASA on evening Programme, please read to end, share and leave a comment.

Your Name:
Am Wesibadde Safina.
Are You a student, if so, which school/institution:
Am a student at Islamic University In Uganda, Kampala Campus.

Your course and year of study:

Your age if you don’t mind:
Am 22years..
I contacted you to have sickle cell dialogue, What does the phrase sickle cell mean?
Sickle cell is a genetic disease which is passed on through genes from parents to children which affects them more when the red blood cells make a blockage which causes pains from different parts of the body.

I don’t want to use this, are you a sickle cell victim?
Ohhh…. Am not strong enough to say sorry to a brave person.
How have you found life while growing up?
It's okay, life while growing up has been a little complicated but still it's about keeping the fight on. I could get a lot of pains especially during the cold season, when I get stressed, when my blood levels decrease and when I get infections like bacteria and others like flu. And when I was too young like before the age of 5, I could get a lot of blood transfusions.

How was life during early school times? Many children isolate!!. How did you go through it?
It was a little tough on me because I couldn't do some activities that others could which always left a lot of questions to them. The yellowing of my eyes and missing out school often due to pains. Time reached when I could not be with friends, many could call me alien and that's where the isolation started being a blocking stone to me.
However, I managed to pass through it because I always had my family support and a friend called Namale Sarah who didn't give up on me at any times, she could give some notes that I missed and play with me simple games. She started creating hope in me and showed me a picture of better future and had to be determined, focused and giving a deaf ear to people's words. She also taught me how to love and accept myself the way i am, like embrace the life with sickle cells. To her, she believed that if something is part of you and you can't change it you only have to accept it and find a way of moving on with life.

When and from where did u complete your primary studies?

I completed my primary school from kisugu Islamic nursery and primary school and sat primary leaving examination at Bilal Islamic school in 2010.

Briefly tell us your high school experience with sickle cell.
Still secondary life was full of discrimination and many students never wanted me to be close to them every time I could join them on a desk, it could be left to only me. This hurt me a lot but academically I could perform better. However, when it reached coupling time I could miss out more, i remember on prom parties, I could fail to get a prom date because of the yellow eyes and stigma that the majority had towards me. Pleasure is that i could participate in students leadership which made me feel at least better than those who stigmatized me.

Safina, there exists a number of sickle cell organizations, did your parents take any step to see u join in the early years?
No, My parents could just ensure that I got medication at the sickle cell clinic at mulago

Thanks for standing against all odds and firmly completed the first levels of education.
You said you’re doing BSWASA at IUIU.
What made you choose IUIU? And why that course?
I chose IUIU because it's an Islamic based University and it is close to my home so it could cut on the distance and minimize on the expenditures.

Which place is that?

And why that course?
When choosing course I wanted industrial art but my sister encouraged me to take Social work and social adminstration because it aims at improving people's well-being in societies which is my passion.

How have you found the course?
The course is good, however sometimes some course units do stress me a little.

Like which course units and how?
Social work and palliative care. It was more about chronic illnesses which also included sickle cells, however, it stressed me somehow though less when we studied the five stages of grief or death.
In other course units my pain killers where considered being addictive which could lead to drug dependency or drug abuse like morphine , tramadol amongst others which worried me sometimes.

Didn’t such make you depressed of your course?
I wasn't depressed it was just stressing and sometimes I could ask myself whether I was fit for the course or not.

At university level, learners exhibit that sense of maturity, let me think it has not been like in the first phases of your education:
True, there is a difference. At campus they have not been that discriminative however some questions still exists like how do I manage my disease and sometime some still ask why my eyes are yellow but I always tell them because it makes me feel like I have created awareness.

What a brave response. Have you used any students platform to create awareness as stated and even end stigmatization?
I have been trying to create awareness through direct talks and also came up with a group called sickle cell warriors I shared a link to different platforms and some students joined it.

Is this enough or?
Have you reached any organizations for assistance in the fight against stigmatization?
I don't only look at stigma alone, I also looked at blood issues which made me join Uganda Red Cross Society, Kampala Central branch that helped me to mobilize blood and also talk to people about sickle cell especially blood. donations at City square.
I reached out to Uganda American sickle cell rescue foundation.

This is was a good step. IUIU works to return to the community through various community services, have you ever reached the university about sickle cell aid?
It's the next on my work plan.

Are you an individual or a team?:
With other team members like, Dr Primrose a lecturer,
Ssekiwongo Hasif, Manzil Ibrahim among others, can't list.

Do you welcome more members?
Yes, we do.

Leave a word to the public:
Since sickle cell disease is genetic I would like to inform students and staff at large that sickle cell disease is a tough disease and no body would wish to give birth to a sickler. On that point I will advise staff and students to take sickle cell disease serious and ensure that at least before marriage they can test for sickle cells just like HIV, because if a carrier person gets married to a normal person there are chances that they could have AA who is a Normal child AS who is Carrier Child and SS who is a sickler. Please I insist get some time and test for sickle cell disease at BMK house 1st floor there is Uganda American sickle cell rescue foundation which offers a free sickle cell test or soon I and my team we shall organize and invite them at campus(IUIU) to extend there services to everyone at campus Insha Allah.
I am really grateful to everyone for there help and support, Somali people, Mr Kasaga Usaam, Mr Aslam, Madam Aisha the dean of students, Namale Sarah, Kwaga Hawa, Ssenono Yusuf, Mubiru Farid, Kagoda Bob, Namakanjo Derrick Fredrick my lecturers, Course mates and friends for their unconditional love and care towards me, and The Campus Torch for sharing my story, am really grateful.
And those who wish to join my sickle cell warriors to fight for a cause whatapp me or call on 0706858430.

Contact us to share with us your true story as we fight for a common cause.


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