Piece by: TONY WAFULA

04 March 2023

• Sickle Cell anemia is not passed through the air or caused by witchcraft.

Joy Watitwa, 36, from Sinoko village, Bungoma, said has lived a life of pain and suffering and decided to devote her life to educating about the excruciatingly painful disease.

It's genetic. It's not passed through the air or caused by witchcraft, she told the Star.

There are medications and treatments but the pain is a frequent companion and life is not 'normal.' No hopscotch or clubbing.

In Kenya, it is estimated that 14,000 children are born with sickle cell disease every year.

Still, a carrier from Western and Nyanza where the caseload is high, should look for a mate in Central, Rift or elsewhere who is not a carrier, so they have a healthy baby.

Testing or the disease is extremely important, especially in Nyanza and Western before any romantic bond is formed.

This is Joy's story:

She said her parents discovered she has a blood disorder when she was just four months old.

In an exclusive interview with the Star in Kanduyi constituency, Watitwa said while she was still young, her parents used to tell her she was born healthy but at the age of four months, she started becoming weak and falling sick frequently.

For instance, she said her mother and father are carriers of the disease but their trait is dormant.

“The percentage of the sickle cell trait in both of my parents are below transmission but it was passed to me,” she said.

Watitwa who comes from a family of eight children said she is the only one with the blood disorder.

Many blood cells that carry oxygen are sickle-shaped, not round. They carry less oxygen to the organs and cluster together, carrying less iron-rich haemoglobin throughout the body. It tells the body to make less haemoglobin, which gives energy.

Haemoglobin enables red blood cells to carry oxygen from the lungs throughout the body.

Fighting sickle cell is not easy as the body is always weak, lacking enough oxygen and developing complications and wounds.

For a child to be affected, both mother and father must carry one copy of the sickle cell gene also known as sickle cell trait.

Waitikwa said because cells are ‘sickle-shaped, they are unable to pass through the blood vessels and in the process, they stagnate and cluster in the vessels, causing a condition called sickle cell crisis.

During a crisis, the blood levels go down, and due to the low supply of blood and nutrients, it causes joint and back pains and can cause wounds.

Watitwa added that a single mosquito bite can cause a sickle cell crisis as the body is weak to withstand harsh malaria disease.

Watitwa said that she is expected to swallow prophylaxis tablets daily purposely to boost her immune system, adding the tablets are very expensive and hard to get in Bungoma.

She said that her legs swell because of a low supply of blood and nutrients to the legs, forming wounds that are not easy to treat and heal, the condition where the blood clots are called deep vein thrombosis (DVT).

“Currently I have wounds on both legs called leg ulcers, they cannot heal very fast because my body has no capacity to fight it,” she said.

Last November, Watitwa said that she underwent apheresis in Nairobi where all her blood was removed and replaced with fresh blood from a normal person

Apheresis is a process whereby blood is transfused from the body and replaced with another's.

“Last year was a very tough year for me as I overstayed in hospitals fighting for my life but after I have undergone a blood transfusion I feel better,” she said.

Watitwa, who works at Bungoma County Referral hospital (BCRH) as the record keeper, said that apheresis is a new technique that has been introduced into the country to help sickle cell patients.

Apheresis is very expensive and costs more than Sh700,000, she said.

She said that apheresis is only done in Nairobi, calling on the Bungoma governor to purchase one apheresis machine to help sickle cell patients.

“Most sickle cell patients in Bungoma cannot afford to travel to Nairobi for the service. if Governor Ken Lusaka wants to help sickle cell warriors then he should consider purchasing the machine,” she said.

Waititwa said that sometimes sickle cell patients fall sick travelling for longer distances to seek medication, adding that hospitals are like a second home for them.

Apheresis doesn’t cure sickle cell but only reduces pain, she said.

Waititwa told the Star she was scheduled for a second apheresis procedure on March, 3, but she doesn’t have money to pay for the hospital bill. The first apheresis really helped her, she said.

Watitwa said she needs Sh700,000 for the second procedure and she has tried reaching Governor Lusaka and Health CEC but her efforts have failed.

"I started looking for Lusaka in January so that I could raise money on time to for this important procedure. If it were not the last year’s apheresis may be I couldn’t be alive today. If I can get a big-hearted person to help me, I will really appreciate it,” she said.

She added that the major challenges for sickle cell patients in Bungoma are lack of medicine, inadequate blood and neglect by the government.

She called on the government to include sickle cell patients in the NHIF cover.

Watitwa says that she is now an advocate for sickle cell disease. She has partnered with others and supports a sickle cell clinic at the Bungoma Referral Hospital paediatric section that hosts clinics every Thursday.

Watitwa called on new couples to visit health facilities and get tested for sickle cell before siring children together, saying that it is extremely expensive to raise a sickle cell baby.

“Bungoma Referral Hospital has a sickle cell testing machine. Kindly don’t blindly get married to a partner if you have not tested for this deadly monster,” she said.

More than 700 children in Bungoma suffer from sickle cell anaemia.

Unlike HIV/Aids and tuberculosis, Watitwa also called on the government to come up with ways to support sickle cell patients.

Doctors in Bungoma have urged young couples to go for sickle cell testing before having children to avoid giving birth to sickle cell children.

In a media interview, paediatrician Dr Dickens Lubanga at Bungoma Referral hospital said this will help reduce the number of 'sicklers' being born.

Dr Lubanga said sickle cell disease (SCD) occurs when a child inherits a defective gene from both parents causing the patient's red blood cells to be sickle-shaped, making it an inherited disease.

Lubanga said that when one inherits a defective gene from one parent, he or she is healthy and said to be a ‘carrier’ of the disease.

“It is therefore important for couples to get tested if they have sickle cell trait before planning for a family,” Lubanga said.

With the support of the former Bungoma governor's wife, Caroline Wesonga Wangamati, Bungoma Referral Hospital acquired a sickle cell clinic in 2021 that has helped in testing for sickle cell traits.

Lubanga said the number of sickle cell patients visiting the clinic has gone up over the years, “If people took this sickle cell test seriously, then the number of children with the disease will go down,” he said.

Initially the sickle cell clinics were done on Thursdays but due to the increasing number of patients. the clinics now operate from Monday to Friday.

“I see over 1,000 patients in a week, which is an alarming number. This prompted the clinics to be done daily to reduce congestion,” he said.Sickle cell disease has proven to be one of the most expensive diseases to treat and manage, asking the government to come in and make medication affordable to the patients.

“This menace can only be handled if we have national conversations on how counties and the national governments can work towards supporting sickle cell testing and treatment,” Lubanga said.

Lubanga said that Bungoma Referral Hospital has intensified sickle cell testing as one of the strategies to fight sickle cell disease, adding the cases are rigorously recorded in Western and Nyanza.

The expert called on people from both Western and Nyanza regions to marry with people from Rift Valley and Central regions.

“Rift Valley and Central regions have fewer sickle cell disease cases,” he said.

However, Lubanga decried an acute shortage of sickle cell drugs including hydroxyurea, prophylaxis and folic acid.

He said that a sickle cell patient needs to take hydroxyurea which helps in increasing the blood levels; prophylaxis helps in preventing malaria throughout the lifespan of a sickle cell patient and folic acid assists in the further production of red blood cells.

“This facility holds frequent drug talks, we are appealing to the government to help us get more medicines to help sickle cell patients,” he said.

A study by experts from Bungoma revealed most teenagers in Bungoma have sickle cell traits, saying that in the coming years, the number of sickle cell cases is expected to hit 4,000.

“I advise people to marry out of their regions so that this sickle cell menace can be dealt with,” Lubanga said.

Despite the fact that Bungoma has a blood bank satellite, sickle cell patients are still experiencing trouble accessing blood since screening is only done in Eldoret.

“We are seeking support from both the government to help us equip our Bungoma blood bank satellite so that our people don’t suffer in dire need of blood,” he said.