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MY JOURNEY WITH SICKLECELL DISEASE AND THE SUCCESS OF SICKLECELL ASSOCIATION OF UGANDA Ruth Nankanja Sempa Executive Director and Founder, Sicklecell.

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Presentation on theme: "MY JOURNEY WITH SICKLECELL DISEASE AND THE SUCCESS OF SICKLECELL ASSOCIATION OF UGANDA Ruth Nankanja Sempa Executive Director and Founder, Sicklecell."— Presentation transcript:

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2 MY JOURNEY WITH SICKLECELL DISEASE AND THE SUCCESS OF SICKLECELL ASSOCIATION OF UGANDA Ruth Nankanja Sempa Executive Director and Founder, Sicklecell Association of Uganda

3 Session Outline My Journey with Sicklecell disease The successes of Sicklecell Association of Uganda

4 My Journey with sickle cell disease I developed swellings on the toes and fingers and got a blood transfusion at six months of age. Growing with Sicklecell disease has been one of the biggest challenges I have had in life. In and out of hospital was the order of the day. I missed school a lot, and my parents were advised to separate since their blood was not coordinated. I was taken to so many traditional healers. Society pointed fingers in my family, stereotyped us and discriminated me. They gave ages at which I had to die. They discouraged my family from paying school fees since I was not going to survive. I would never disclosed to anybody that I had Sicklecell disease until in the year 2000 that I felt a bomb that was about to explored within me and I got tired of sitting on it so I had to break the silence and came out publically to form the Sicklecell Association of Uganda.

5 Successes of Sicklecell Association of Uganda It fundraised for UGX 54 million and bought an Hb- electrophoresis machine for Mulago National referral hospital SAU saved our hero baby (Tezigatwa Aisha) who at three years in 2003 had got 28 Hospital admissions and 32 blood transfusions; she could not grow tall or even start school. Ugandan Doctors did not know what had happened to her and SAU wrote to Prof Graham Serjeant who then flew to Uganda and taught our Doctors to do the spleenectomy since that she has never had other transfusions and been admitted once with malaria. Several spleenectomy have been done to other patients that need them as a result of this Participated in the drafting of the National Health Policy and the Health Sector Strategic Investment Plan III of Ministry of Health that incorporated sickle cell disease for the very first time.

6 Conclusion

7 Contact Us Please visit our website to find out more: www.patientsorganizations.org Tel: +44 20 7721 7508 Fax: +44 7721 7596 Email: info@patientsorganizations.org


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