My journey with sickle cell disease

At the age of 8, Arafa Salim had already made frequent visits to the hospital. At such a tender age, she didn’t understand why she had to visit the hospital so many times. Out of curiosity, she decided to ask her parents. That’s when she was told that, eight months after her birth, she was diagnosed with sickle cell anaemia. Even after such revelation, Arafa still had no clue what sickle cell was.

21 years later, Arafa, now 27 and married to Said Msangi boldly shares her life experience on the challenges and endurance she faced while battling to live with sickle cell disease. Her husband, Msangi, is a co-founder of the Non-Governmental Organisation (NGO) on Sickle Cell Disease (SCD) patients’ community of Tanzania. The NGO receives financial support from Arafa’s family, friends and a support groups on Facebook.

Arafa says that explaining the struggles faced by a sickle cell patient is very tough. This is because one might look physically healthy, while the disease weakens you from within. “You feel sick on the inside while you look fine on the outside. It is a daily struggle,” she says.

Finding courage

A manifestation of her courage gleamed throughout the interview I had with her at Muhimbili National Hospital (MNH) at the department of haematology and blood transfusion. She was smiling most of the time.

“Being happy is an inborn trait, I have been a happy soul from my childhood. I love laughing. I accept what life has to offer and I guess life is too short and therefore enjoying it is a must,” says Arafa.

According to the 2014 guidelines for management of sickle cell, SCD is a major health problem in Tanzania. Every year approximately 11,000 babies are born with SCD and the number is expected to more than double by 2050.

Having experienced the pain, and having in mind the surging statistics of patients suffering from SCD, Arafa decided to start an NGO with the aim of creating more awareness on the same to help patients know their rights and how they can live with the disease.

“All I can say is growing up with sickle cell anaemia affects a whole range of socioeconomic activities from education, relationships and employment. But the hardest battle is having to withstand the excruciating pain that comes with the disease. The pain is the most common and stressful thing affecting all SCD patients,” Arafa points out.

Growing up, Arafa had to accept the reality as she tried to make the most of what life had to offer, even while suffering from SCD. But as she lived a free-spirited life, she later had to restrain herself from participating in certain activities so as to avoid health relapses. She also developed a more positive attitude that has since then allowed her to live her life to the fullest but not forgetting the required health precautions. She also finds extra purpose by sharing her story with others.

Stigma

Just like most diseases, SCD comes along with stigma. Some of her relatives and friends never understood her when she had to withdraw her participation from certain activities. They would label her an “excuse maker, or a mama’s baby”.

“I was so skinny and my eyes had turned yellow when growing up. People used to mock me. Even when you look at me now, I don’t look my age, I look a lot younger. Stigma around SCD made me stand up for others too and encourage everyone to believe in themselves,” says Arafa.

The NGO Arafa started is also the platform for campaigning about all issues affecting the community, more specifically sickle cell anaemia as it can be prevented.

“This could be achieved through genotype testing which is a painless procedure that determines if someone has this disorder or carries the trait. It is one way of saving our children from the pain, agony, complications and premature death that comes with sickle cell anaemia,” says Arafa.

Arafa, who has four brothers and two sisters who have sickle cell traits, says that everyone from her family has always been there for her and she grew up with a lot of support from her parents and siblings.

Arafa emphasized that SCD can also affect relationships. She said that she has a friend who was divorced just because of the disease. Her other friend was separated from her husband because the man didn’t want to be with a sick wife having to spend all those hours in the hospital with her.

Relationships have always worked well with Arafa, however, she acknowledges the challenges that exist. Before she started dating her husband, she opened up to him about her condition and he still stood by her.

“I told him about my condition but he had no problem with it. I however, gave him time to educate himself on SCD and see if he was still ready to be in a relationship with me. I am married to my caring and supportive husband, who stands guard at my bedside each time I am ill,” says Arafa.

According to Arafa, who holds an advanced diploma in Business Administration from Learn IT Institute of Business and Information Technology, her husband was ready and he went for the genotype testing. In their marriage of two years, the couple is planning to have healthy babies.

SCD status in the country

Commenting on SCD status in the country, Dr Deogratias Soka from MNH department of haematology and blood transfusion said about 70 per cent of infants are born with the SCD since it is never easy to identify them as no hemoglobin electrophoresis is done.

“Early SCD detection has helped save 95 per cent of lives of the infants in developed countries. But in Tanzania, most infants do not even live to see their second birthday,” says Dr Soka.

He said that, his department is mainly focusing on four areas to help raise awareness on the disease. These are treatment, providing training to health workers, research and advocacy. This helps people to go for testing and know their status. However, the SCD test is only available at MNH.

“It is very challenging as MNH is the only hospital that can offer this test. It means that majority of Tanzanians do not have access to the test. And the most affected part with SCD is Lake Zone,” he says.

“Currently, MNH is planning to launch a project on massive screening among infants. The project will help people know how to deal with new cases hence help save lives of innocent babies,” adds Dr Soka.

He continues, “SCD is an expensive disease. However, there is cure through bone marrow transplant. It involves a lot of risks to the patient and can cost up to $30,000 per person.”

It is therefore a challenge to the community and health workers who have benefited from the health training from MNH to share the message with the community to reduce the increasing number of the patients.

The 2014 guidelines for management of sickle cell show that Tanzania has the fourth greatest number of annual births affected by SCD in Africa, and the fifth greatest in the World. In addition, almost 20 per cent of the Tanzanian population carry a copy of the sickle cell in the form of sickle cell trait (AS).

Last week, Tanzania hosted a H3Africa SCD meeting. Presenting his paper titled ‘100 Years of SCD from African Perspectives’ during the first day meeting, Professor Kwaku Ohene-Frempong, from Sickle Cell Foundation of Ghana described SCD as a disease that runs in the blood, as embodiment of humanity.

Concluding on his paper, he said SCD is an ancient disease of Africa and India, which over the past century has been revisited and revealed much about human genetics and evolution. While much has been learnt from Africa about SCD, the continent lags behind when it comes to benefiting from what modern science has offered others.

He further said that, while much more needs to be done about SCD in Africa, the challenge of implementing what has proven to be useful remains formidable. The need to develop solutions for SCD in Africa remains a modern challenge.

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