Blood shortage, Covid-19 add to woes of sickle cell patients

Battling sickle cell disease during a pandemic in a country that has a blood shortage is a tough war for the patients.

Until four years ago, Ann Kwamboka, 24, had lived her life knowing that she was anaemic. She learned that she had sickle cell disease, one that is regarded as an inherited red blood cell disorder that has an abnormal protein which leads to a number of complications.

"Growing up, I did not realise that other people did not experience the same health problems I did. I could not come to terms with why I did not engage in some activities," says Ann.

She did not understand why her parents chose not to reveal her condition to her. "Maybe they wanted to protect me from getting into depression and from stigmatisation,” she said.

Even in 2014 when she was diagnosed with leg ulcer, no one told her that the underlying disease was sickle cell disease. In 2016, when she learned of the disease while in hospital, a doctor mentioned it casually, throwing her into shock. Depression took a toll on her, she was in denial. She started researching on the disease and what she found online was even more depressing.

DRUG STOCKOUTS

Mary's case was different. The 27-year-old sickle cell patient sought anonymity for fear of stigmatisation. She was diagnosed with the disease at six years old, and her parents were supportive, only that very few people who associate with her know of her condition.

Covid-19 has brought with it pain and stigma. "One time my body was very painful, so I went to a local clinic for medication. I was crying and had occasional coughs, the doctor kept asking me if I had a cough that could be linked to the coronavirus. My temperature was high, but that was normal because I had a headache and it was just my disease causing the symptoms, not Covid-19," she says.

In Taita-Taveta County, sickle cell patients have not had the luxury to visit clinics for medication since March. Lea Kilenga, director of Africa Sickle Cell Organisation based in Taita-Taveta County, said the pandemic had not been kind to sickle cell patients in the county. 

"Most clinics were closed in March, they were reopened this month, but that was quite a challenge to the patients. Most drugs are out of stock, so had the clinics been open, services would still be affected because of the shortage of medicine," said Kilenga. “The situation was so bad that the patients who had medicine in stock had to share with those who did not have any."

When clinics in Taita-Taveta County were opened last week, they received about 10 patients who needed blood transfusion, but there was a shortage.

This comes at a time when there is a nationwide blood crisis hence the numerous appeals for blood donation. Sickle cell patients have haemoglobin levels of less than 10. The normal haemoglobin level for females is about 12 to 16, for males 13 to 18, when it is very low. The patients become very weak and need an urgent blood transfusion to function normally.

GENE THERAPY

Dr Githanga Jessie, an associate professor at the University of Nairobi and a haematologist (blood specialist), said most sickle cell patients needed blood transfusion because of low haemoglobin (or blood) levels. “It is even worse during this pandemic because people used to get blood during blood drives, but this cannot happen because of the restriction of movement,” she said.

She also alluded to the fact that there were many misconceptions around the disease and it was important that people be enlightened. 
"Sometimes parents may start blame games thinking that one is the cause of the disease, others think that it is a curse, or an effect of diet consumed during pregnancy, or they are in denial which could lead to stigmatisation," said Dr Githanga.

She advised that neonatal screening be done for children since the diagnosis will be made earlier. The disease is diagnosed using a blood test. "A young baby may not show the signs of sickle cell anaemia because they are 'protected' at birth, so at the age of about six to nine months, they need to be tested," said the haematologist.

On stigma, Dr Githanga said sickle cell disease was not infectious and people should not fear being near patients. "Sitting next to a person with sickle cell will not make you get it," she said.

The disease has no cure yet, although there are many researches going on that could possibly give hope for treatment. So far, it is only bone marrow transplant and gene therapy - which is still being researched on, that could possibly cure the disease. Unfortunately, the two are quite expensive and not everyone can afford to have them as an option.

As World Sickle Cell Day was marked on Friday, Ann and Mary said they had learned to live with the pain. "Every pain free day is a blessing. Even when the pain comes, I always think to myself that it will pass,” said Ann. She encouraged sickle cell patients to share their stories to inspire other people. Mary, on the other hand, said she had to quit support groups because “they did more harm than good”.