Thalassemia/Sickle cell awareness campaign

Thalassemia/Sickle cell awareness campaign

From Godfred Oduro

To create awareness of thalassemia and sickle cell which is genetic disorder for about 20 senior high schools. There would also be Hb eletrophoresis test for the students and blood donation.

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MY STORY: ENCOUNTER WITH THALASSEMIA

My name is Godfred Oduro and   I am married to Mrs. Portia Oduro. We are blessed with four children.  I am a teacher by profession and my wife deals in wedding decoration and pastries

The Foundation came to existence as result of our eight years family life experience in raising children who often are attacked by severe pain in the bones and abdomen. Millions of cedis, and weeks have been spent at various hospitals seeking medication and remedy for our wards for an untold disease which strike at the time it is least expected. One would ask “Did you do laboratory test before getting married?” Yes, we did.

The irony of the situation is that we got to know that my beautiful wife is AS and I am AA genotype from the various Hb electrophoresis tests that were conducted. Our first born had FS genotype and second born had SF. We could not understand the situation. The children kept on being admitted at the hospital frequently with the attendant high cost of medication and sleeplessness. They are sometimes diagnosed with sepsis and might be not able to walk for about week. Currently their genotype has changed from FS to S and SF to SC. They are now treated as SS kind of genotype persons. We are and have always lived in fear whenever they complain of pain in any part of their body.

The puzzle of this unfortunate situation was later unravel as the AA genotype test conducted on me did not actually indicate the AA genotype but rather “A” only. Hence, I am a carrier of the Alpha Thalassemia trait. This has been the reason for the pain my son in particular has been experiencing and the reason for the type of genotype they carry.

These situations have had a crippling effect on my finances, placed hardship and uncertainty on my family whenever the crisis strike. Our situation led us to talk to a number of people, discussing our circumstances and advising would-be couples and also encouraging people who are going through similar situation.

To carry out our awareness campaign properly, Thalassemia Foundation was established in conjunction with the support group ‘Ghana ThalaSickle Patient/Parent Association’ (GTPPA)

 Bringing up a Thalassemia and Sickling child is very traumatic and emotionally draining experience. Parents, guardian, patients and family need a strong emotional support to lean on.

GTPPA is here to lobby governments for reduction in cost of medications, better treatment and recognition from society and health workers, share ideas and information, etc. It is to be a pillar of strength to parents and family members. Thalassemia Foundation is registered with the Registrar General’s Department with registration number CG208572018 and TIN C0018310990.

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