4 years ago, United Nations resolution made June 19 World Sickle Cell Day, to promote awareness because “Sickle Cell is a Global Health Problem!”
My name is Arafa Salim Said. I am a Sickler. I am also a founder and Chairperson of Sickle Cell Disease Patients Community of Tanzania. It is a registered Non- Governmental Organization whose objective is to create awareness and advocate to the Sickle Cell Disease and Traits.
Like all these children in here, I have seen and felt the pain that each of these children is going through. I have laid in this ward, I have been in a coma, I have had stroke and lost every sense in my body. All because of Sickle Cell Disease.
Sickle Cell (SC) is growing in Tanzania. And the most affected are children. Most children with Sickle Cell Disease have at some point suffered a stroke and some more than once. The costs for treating these patients is very high. It costs at least Tsh. 100,000/- to pay for investigation fee. Most families in Tanzania with children with Sickle Cell Disease cannot afford this amount. So many children have ended up being cripples with others losing their lives. As a community, it is our role to help in breaking the Sickle Cell Disease Cycle in children.
As I have noted before today is World Sickle Cell Day, and we have taken this chance to launch a one year campaign that will see us assist children with Sickle Cell Disease ease their pain. SCD Patients Community of Tanzania will host different activities to raise money that will pay for the children’s investigative fee. We need Tanzanians to join us in raising these funds.
There are several ways that you as a Tanzanian can help in stopping the pain in children with Sickle Cell Disease:
- By donating blood
- Leaders at all levels: Talk about the state of Sickle Cell for assistance and to advocate for our SC Community.
- Organisation / Individuals: Please Pay Investigate Fee at least for one child suffering from stroke as a result of Sickle Cell Disease.
- Teachers: Educate children about Sickle Cell to avoid the children with SC being misunderstood in the community.
- The public at large: We request that you join us to learn the truth about sickle cell, blood and donations. We need you to help persons diagnosed with SC to live.
I take this opportunity to thank everyone who is here and is supporting us. We also call upon all Tanzanians to join us in giving Tanzanian children with Sickle Cell Disease chance to achieve their dream by stretching a hand to them.
Arafa Salim Said
Founder / Chairperson
Sickle Cell Disease Patients of Tanzania
Great, kweli Tanzania tumekuwa nyuma sana na hili ni janga kubwa sana. Viongozi wetu wapo kimya sana kila mtu anapiga kelele ukimwi wakati kila mtu anajua ukimwi unavyopatikana na kwa asilimia kubwa naweza kusema ni ukimwi ukitaka utaupata lakini sickle cell ni ugonjwa wa kurithi ambapo baba na mama wakiwa carriers basi mtoto anakuwa carrier au sickler sasa hapa ndio muhimu watu kufungua macho kuona jinsi munaweza kuwasaidia watoto na sickle cell
ReplyDeleteDear Arafa Salim, pole sana na hongera kwa kuanzisha hii jumuiya ya wagonjwa wa sickle cell.
ReplyDeleteIn sickle cell disease, the Haemoglobin (the stuff that carries oxygen around our body), differs from the normal adult haemoglobin by substitution of valine for glutamic acid at the 6th position of beta chains.Sickling occurs when the Haemoglobin lacks oxygen, and this Haemoglobin can not perform its work properly.
I will try to get in touch with this organisation once ib Bongo land.
Dr Gangwe Bitozi.
Asante sana Dr na waTanzania Walio soma and get to understand what SICKLE CELL IS.. I HAVE A PAGE ON FACEBOOK CALLED SICKLE CELL DISEASE PATIENTS COMMUNITY OF TANZANIA.. PLEASE LIKE THE PAGE AND YOU CAN CONTACT ME THROUGH THERE OR EMAIL ME AT arafa.said.salim@gmail.com thank you In advance.
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