The term sickle cell disease (SCD) describes a group of inherited red blood cell disorders. People with SCD have abnormal haemoglobin, called hemoglobin S or sickle haaemoglobin, in their red blood cells.
Haemoglobin is a protein in red blood cells that carries oxygen throughout the body.
‘Inherited’ means that the disease is passed by genes from parents to their children. SCD is not contagious. A person cannot catch it, like a cold or infection, from someone else.
People with SCD inherit two abnormal haemoglobin genes, one from each parent. In all forms of SCD, at least one of the two abnormal genes causes a person’s body to make haemoglobin S. When a person has two haemoglobin S genes, Haemoglobin SS, the disease is called sickle cell anaemia. This is the most common and often most severe kind of SCD.
Arafa Salim Said is a founder of the sickle cell disease patients’ community of Tanzania and also she is a Sickle Cell Disease patient.
In an interview with The Guardian she said, “I was diagnosed at a very tender age of 8 months and I have been an outright warrior ever since”.
She explained that “growing up, I found that letting the disease limit me would make for me a difficult life ,so I adopted a positive attitude. As I look toward the future, I do not feel bad for myself and I see sickle cell as just a challenge in life not different than any other”.
According to her, firstly she had been fighting the disease ever since. As she grew older she realised there was an immense gap with regards to information about Sickle Cell Disease in the country.
Arafa said as a founder of sickle cell patients community in Tanzania she is a big believer in giving back to the community and she have invested over five years on heavily crusading the misinterpretation and misinformation about the disease in the country.
She said there has been major misleading information about the origins and the spreading of Sickle Cell Disease, in some cases people even referred it as a curse cast upon by witchcraft. Therefore there is need for raising awareness and Confidence building and Support.
“The roads have been long and winding, but through the grace and mercy of the good Lord, I am here to give testimony. Here I am ready, willing and able to make a difference. Please stand with me,” she revealed.
According to her, apart from all those, she likes spending her time playing with the children suffering with the disease giving them support and care.
She noted that about 50 to 90 per cent of children living with sickle cell disease in Africa die before their 5th birthdays.
“There are hundreds of families in Tanzania living with the burden of sickle cell disease but did you know that the most affected are the children?” she noted.
She said as warriors it is important to understand your own body and type of strain you have.
Management is key to being healthy. Eat healthy, exercise and drink lots of fluids but most importantly, carry on and live like a normal person.
Developing a healthy self esteem, being optimistic about life- choosing to live each day, avoiding self-pity; having set goals, targets and projects also helps to give one something to look forward are all what needed.
Also it’s the mindset you have built up when strong that will help you come through when weak or in crisis.
She said: “Life can be beautiful, yes, beautiful with sickle cell disease with or without. Chose life, its worth living.”
Recently, Muhimbili National Hospital (MNH), sickle cell department announced the commence of a programme of New Born Screening for Sickle Cell to children which will reduce death of children under five years caused by sickle cell disease in the country.
The programme to be conducted by sickle cell department at MNH in collaboration with Ministry of health and social welfare and other health sector stakeholders will be implemented in four hospitals of Dar es Salaam Region.