Battling sickle cell with pride: Tale of courageous patients

She was barely 10 years old when doctors wrote off her chances of survival and told her it would be a miracle if she lived up to 18 years old.

But Lorriet Anne has defied all odds that had stacked up against her to become one of the greatest inspirations to patients suffering from the sickle cell disease.

Her story is one to behold. A story of optimism, courage and dedication to overcome a condition she was diagnosed with when she was only six months old.

Her broad beautiful smile, kind words and full of life attitude tells it all when you first meet Lorriet.

For years, she endured discrimination and stigma as a result of the frequent sicknesses that come with the disease.

“It has not been easy growing and my classmates and neighbours treated me with contempt,” she says.

She would miss school for weeks after being attacked by the disease, which made her lag behind in her education, something that would expose her to constant criticism and being labelled as lazy and a slow learner

She says the disease hits harder whenever she is on her periods.

She mentioned challenges of accessing drugs that are so expensive and are not covered by insurance companies.

Now, at 25, Anne has become a successful advocate for those living with the disease in Kenya, where nearly 14,000 children are born with the condition every year.

She has dedicated her life to providing inspiration and care to other patients, especially, teenagers who are battling the disease.

“With all the things that I have been through with the disease, sickle cell has not defined me as I am an entrepreneur in the clothing, textile and interior design industry,“she says.

“People should stop spreading the notion that those affected by the disease cannot live past a certain age, in this case 18. Those are lies. Look at me. I am looking forward to many more years ahead, “she says.

She is among a group of patients in Western Kenya who are living with sickle cell and have come together to provide emotional support to other patients struggling with the disease.

The sickle cell warriors also started a support group dubbed West Kenya Sickle Cell Disease Support Group to give support to Sickle Cell Warriors and their caregivers.

Like Lorriet, Michelle Omullo, 30 was also diagnosed with the genetic blood condition in early childhood, 27 years ago at Kenyatta National Hospital.

The filmmaker who doubles up as a sickle cell advocate says her life has always been a rollercoaster of emotions, and getting her medication has been a difficult affair.

“I would go without my medication for a long time because I could not afford it. At some point, I suffered a mild stroke that hit my right side of the body, which made the situation worse because I also need to go for physiotherapy, which is also expensive, “she narrates.

She appeals with the government through the Ministry of Health to make treatment or medication for sickle cell free just like Antiretroviral (ARV) drugs for HIV.

Dr Maureen Muchela, a paediatrician from Jaramogi Oginga Odinga Teaching and Refferal Hospital (JOOTRH), sickle cell anaemia is an inherited blood disorder where there is an abnormal formation of haemoglobin in the red blood cells of the infected individual.

She says Haemoglobin S, a variant form of haemoglobin, is present in patients with sickle cell disease and sickle cell trait.

“For a person to be affected, both the mother and father must carry one copy of the sickle cell gene, also known as sickle cell trait, and pass both copies of the altered form to the child. If only one parent passes the sickle cell gene to the child, that child will have the sickle cell trait, therefore 50 per cent chance of getting the disease,” she explains.

Dr Maureen says when the red blood cells have the abnormal haemoglobin, they tend to solidify and it in return deforms the red blood cells to form a sickle cell shape.

She says the disease presents itself with pain in the legs and even the entire body after the cells clogs the blood vessels.

She says the disease can be cured.

“There are new procedures, such as the bone marrow transplant where a person is given other potential cells that are able to produce red blood cells within the body that are from a non-diseased individual,” she explains.

She adds that treatments availale only go to reduce the symptoms and pain.

She, however, agrees that the cost of treatment is high, noting that the national Hospital Insurance Fund (NHIF) only covers for the drugs available in public hospitals only.

”A lot of advocacy needs to be done, screening and testing for those living in prone areas,” she suggests.

Nyanza and Western regions are one of those prone areas bearing the country’s highest burden of sickle cell at an average of 18 per cent.

Pneumonia immunisation

She further explains that as a consequence of their condition, people with sickle cell disease are at high risk of developing an acute infection of the pulmonary parenchyma called community-acquired pneumonia.

“So, it is vital for sufferers to get a booster immunisation against pneumonia and get yearly influenza vaccine and this will be helpful in preventing further complications of the disease,” she offers.

Compared to other diseases, she says sickle cell does not receive a lot of funding.

With the complications that come with the disease, she states that the lifespan of a person living with sickle cell is short, but there is hope as with all the care that is currently going on, those affected are now living longer.

“Personally I know sickle cell warriors who are 30 years old and above with the oldest person in Africa heading to their 60’s,” she says.

She adds that if the complications are managed well, they can live for many years.

According to the World Health Organisation (WHO) about 14,000 children are born with sickle cell in Kenya and majority barely make it to the age of five due to the disease.

In 2021, Kenya developed its guidelines for control and management of sickle cell disease, which will be used to bring to light the interventions needed to control and manage the disease.

The first edition also lays emphasis on early diagnosis and the measures required to reduce the impact of complications and mortality.

“The emphasis must now move towards early detection and prevention of long-term complications of sickle cell disease. This early diagnosis of is important to initiate prompt management,” the new guidelines state.