The Sickle Cell fundraiser dubbed as coffee for champions was done under the organization’s third program. The activity was solely done to help in fundraising for money to buy drugs for identified children from the informal settlement areas within Kisumu central subcounty. The organization intended to create awareness to the public on Sickle cell anaemia disease as well as raise funds for supporting patients. Peperusha Binti identified 10 children within three informal settlements to support; 3 from Nyalenda, 5 from Obunga and 2 from Manyatta. This was done on 1st October to mark the start of Sickle Cell awareness month, with several partners like Amazing Kisumu, WOVOP, Dala shoppa, Youth Alive, Kisumu Progressive Youth, Chadala Kenya, TINADA, TWSC, and Sitarusha Mawe Tena CBO, coming in to help in the whole activity. Peperusha Binti also invited medical experts to help shade light, give facts on the disease and statistics around it.
Sickle Cell Anaemia is a group of disorders that cause red blood cells to become misshapen and break down that has been acknowledged by World Health Organization (WHO) as a major public health priority. It affects millions of people around the globe and is the 4th leading cause of deaths in children in many developing countries. With sickle cell disease, an inherited group of disorders, red blood cells contort into a sickle shape. The cells die easily, leaving a shortage of healthy red blood cells and can block blood flow causing pain. Most children with Sickle Cell Disease die undiagnosed with 50-90 per cent dying before their 5th birthday. The condition usually presents in childhood and is characterised by abnormal, rigid, sickle-shaped red blood cells and is exacerbated by low oxygen levels, dehydration and concurrent illness.
People with this disease may experience pain in the joints, pain can be sudden in chest, dizziness, fatigue, low oxygen in the body, developmental delays, jaundice, pale skin, shortness in breath among other symptoms. Sickle cell requires a medical diagnosis and the management remedies include; medication and blood transfusions. Currently, the only available cure for Sickle cell disease is bone-marrow transplant. Management of Sickle Cell anaemia is usually aimed at avoiding pain episodes, relieving symptoms and preventing complications.
According to Kenya Medical Research Institute (KEMRI), statistics shows that out of 100 children born in Kisumu County, 21 of them have the disease. This statistics is growing each day at an alarming rate, and through some interventions like new born screenings can be of help to reduce the mortality rate.
Sickle Cell Anaemia is just like any other disease and should be treated as such. Patients with this disease or trait need very high level of care and need medication for the rest of their lives, therefore, there should be readily available screenings of new born babies and regular screenings coupled with provision of comprehensive medical care to detect the trait as early as possible which will be associated with a significant reduction in related mobility and mortality.
Screenings should also be available for couples who intend to get married so as they can be prepared to bear a child with the trait or disease. Through this, it will be easier to identify carriers and give them counselling to help them through marriage and to know how to conduct their affairs and ensure there is low chances of their kids having the disease or surviving it.
The community should be sensitized on matters dealing with such diseases to end the stigma, myths and misconceptions that are still within the society. The use of social media to create informative short clips and flyers would increase the number of people reached to get better impact in changing society’s view of minority diseases like sickle cell.With the daily medication needed, there is an economic drain on parents who have children suffering with sickle cell as the drugs are quite expensive. The government ought to reduce the prices of drugs as it is a basic need for these patients.
The number of patients are rising each day and Peperusha Binti would like to have a county wide campaign on Sickle Cell sensitization and awareness creation to help keep the campaign a float and shun the myths and misconceptions around Sickle Cell disease. In addition, the organization would also like to have monthly visits and follow ups for these children and if there is availability of resources, spread its wings to further help in supporting the parents of these children and many more.
We should all be ambassadors of Sickle cell, create awareness around it, advocate for it and educate the community members to stop stigma around it. Sickle Cell like many other minority diseases are a threat in our country and should be recognised just like HIV/AIDS, Tuberculosis and the rest. According to Kenya Medical Research Institute (KEMRI), statistics shows that out of 100 children born in Kisumu County, 21 of them have the disease. This statistics is growing each day at an alarming rate, Peperusha Binti would like to reach greater heights when it comes to We care Sickle Cell program. Being that this is a new program within the organization, we intend to push it till it becomes impactful.
Peperusha Binti invited a few survivors of Sickle cell whom talked about their journey through. They came out to tell of how hard it has been on them financially, physically and emotionally not only to them as individuals but to their families and the communities where they come from. The many episodes they had their community members rushing them to the hospital looking out for them and their care programs. They all encouraged the audience to stand together and fight against the disease for it can only be managed by a collective effort of the whole community involvement.