"Many people do not want to cater to people living with sickle cell disease because they think that they are going to die tomorrow. Many of us have managed to rise up to high ranks. Having sickle cell is not a death sentence. We should refuse to be victims, but rather victors and live to encourage others to do the same." --Ssebandeke Ashiraf
Ssebandeke Ashiraf embodies the true spirit of a sickle cell advocate. He has been an advocate for sickle cell disease for over 10 years from Kampala, Uganda. His advocacy work started at the age of 14. While in high school he began speaking about sickle cell, which was almost a taboo in Uganda. At the time information about sickle cell in Uganda was non-existent. Ssebandeke has put his educational career at risk to fight for the rights of fellow students living with sickle cell disease who were mistreated by the teachers. Since then, Ssebandeke has continued to fight negative stigmas surrounding sickle cell. It has become a lifestyle for him.
In 2013 Ssebandeke co-founded the Sickle Cell Network Uganda a not-for-profit sickle cell advocacy organization. In Uganda there are very few screening centers that test for sickle cell disease and trait. The few centers that do offer screening are expensive (costing between $7 to $30 dollars) for most people who live on one dollar a day. To-date, the Sickle Cell Network Uganda has far offered free sickle cell screening to over 7,000 people, and has reached over 20,000 people (visiting schools, hospitals, worship centers and communities) just within the last year for sickle cell awareness and management care.
In August 2015 Ssebandeke and his team carried out free sickle cell screening and awareness at Atutur hospital in Eastern Uganda, an area that has been severely hit by wars including those involving Kony’s armies. Of the 515 people they screened, 221 were diagnosed with sickle cell disease, 197 had the trait. They then proceeded in collaborating with Atutur hospital and started a sickle cell clinic which offers free services.
In 2015, Ssebandeke started a sickle cell awareness campaign called, "30 Days 30 People 30 Messages of Sickle Cell". The campaign used images of individuals holding up signs with messages to raise sickle cell awareness. The campaign ran for the entire month of September and featured people from all over the world and with many races included. The campaign reached about 20,000 people across 5 social media channels: Facebook, Twitter, Instagram, Whatsapp, Google Plus.
Taking sickle advocacy one step further, Ssebandeke started a Whatsapp group which has membership from Uganda, Kenya, Tanzania, Rwanda, Qatar, Nigeria, USA, Zambia has helped to connect many people and advised on awareness and advocacy strategy.
“With the work Ashiraf has done [for the sickle cell community] I am confident that he deserves to be voted as Sickle Cell Advocate of the Year.” -Moses Mukuye
It is definitely safe to say, Ssebandeke is a phenomenal sickle cell advocate.
More about Ashiraf Ssebandeke
From September 2015 (the launch) to today, the clinic has registered over 700 patients. They have managed to donate 300 hot water bottles for pain management and have provided a 2 month supply of folic acid to 89 patients. Most of the people have low incomes and can’t afford to buy medications.
Ssebandeke's advocacy efforts don't stop there, in fact he has taken his activism to many more platforms.
Ssebandeke has lobbied to have sickle cell included on the list of diseases to focus on in the Parliament of Uganda. As a result sickle cell awareness was included on the activities and Members of Parliament were sensitized and screened for sickle cell.
Ssebandeke has also been instrumental in the formation of National Sickle Cell Association of Zambia. It is the second sickle cell advocacy organization in the Southern part of Africa.
"When we got to Atutur we found many children who were physically crippled due to poor pain management and strokes. Zalika, who suffered from a stroke at the at the age of 11 was affected by club (left). Since working with her, at 14 years old (right) her foot has been corrected and she can walk again."
Ssebandeke has been consistent voice for national newspapers and other media outlets to raise awareness about sickle cell. In 2010 while in his first year at the university he started writing articles and published by newspapers in Uganda at a time when no one was writing about sickle cell. Currently other people have emulated his effort and started to write to have their voices heard.
Working with the Sickle Cell Network Uganda his team has they managed to partner with Uganda's Ministry of Health and launched a sickle cell survey, which would be the second census in the country after 1949. This survey helped to awaken all stakeholders to the reality of sickle cell scourge.
When he went to Atutur hospital he found many cases of children who have physical disabilities which were due to poor pain management and stroke. Ssebandeke started an initiative for helping these children get operated and get back to their recover back to normal. He started with Zalika a 14 years old girl who suffered
from a stroke at the age of 12 resulting in club foot on her left foot. After mobilizing funds, Zalika was operated on and she is now in last stages of rehabilitation.
Last year, Ssebandeke has also provided assistance to a young girl with sickle cell disease who was raped and infected with HIV. He has helped to provide her support for her situation, while providing financial assistance with medical bills. He encourage and assisted her in enrolling in school again after dropping out in 2010. She graduated this February with a certificate in HIV Management.
Ssebandeke was also the runner-up candidate for the 2014 Sickle Cell Advocate of the Year.
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