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Living with Sickle Cell Disease: The Unfathomable Pain ‘Understood by Only a Few’

Sickle Cell disease is one of the leading causes of mortality and morbidity in Uganda. This Non Communicable Disease is largely characterised by periodic episodes of pain called pain crises, anemia, dizziness, fatigue, low oxygen in the body, or malaise among others.

In Africa, Uganda has the 5th highest burden, a situation aggravated by limited and inaccessible formal social support structures to aid patients and families cope better with the psychosocial burden of SCD as per the research article published by BMC Public Health in 2018.

SCD is associated with progressive organ damage coupled with episodes of acute illness. The episodes of acute illness result from the damaged, ‘sticky and stiff’ red blood cells which clog tiny blood vessels.

This often results into various conditions not limited to organ and tissue damage, anemia, increased risk of infection and general body pain episodes.

Living with SCD;

Matilda Nanyondo, 24, is one of the people living with SCD, and has been facing stigma throughout her life.

Discovering that her infant had sickle cell disease at only 7 months, her mother knew that Nanyondo was a delicate child.

“I was told by my mother that the sickle cell disease was discovered while I was only 7 months old,” Nanyondo said.

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Despite the illness, Nanyondo has completed school; she attended Global Junior School for primary, Mt St Henry’s High School for secondary and finally YMCA; specialising in beauty and cosmetology.

However, she said that her school days were full of challenges.

She revealed that the pain, coupled with isolation affected her and this lowered her self esteem.

“Every school I could join, my mum could tell them about my condition. The teachers took it as if I was showing off. They always gave me hard punishments because they would say that I can’t be beaten,” she explained.

Stigma

Nanyondo revealed that her self esteem dropped more when she was mocked for some of the trivial things she did, like any other person would.

“I remember posting something about sickle cell on my status. Someone asked me why I go around telling people that I am sick. They even asked that ‘do you want the whole world to know that you have sickle cell’?”

She says that although her intention was just to reassure someone who could have lost hope, she was misunderstood.

“It really hurt me, I cried. I don’t know why people don’t understand me. I find it so hard because I always want to avoid being stressed. I find it difficult to stay with people because they don’t understand me,” she said.

Nanyondo added that stress triggers attacks and during her time in school, comments like “You show off too much, you are a pretender” that her classmates threw at her, took a toll on her composure and stressed her out.

Because of the pain that comes with the disease, she said, she took strong pain killers, which would weaken her.

“I remember someone told me, ‘you can’t even wash, you can’t do anything, you are useless’. I don’t know why people say such things because even if I try to explain to them my condition, they can’t understand,” she narrated.

Isolation

Due to her delicate condition, Nanyondo was always isolated because people were afraid to be around her.

“Till now, people fear me. They think i am going to die the next day. People who don’t know about sickle cell disease, don’t know what it means to get an attack. They always say, “that girl has a problem. So, you are isolated. It hurts me so much and it makes me fear to open up to people about my condition,” she said.

This, Nanyondo says, has made it difficult for her to engage in relationships like any other young adult.

Health Complications

In 2018, Nanyondo was diagnosed with Rheumatoid arthritis; a chronic disorder characterised by painful joints.

Dr Bob Opoka, a Paediatrician consultant and Sickle Cell Researcher said that such painful episodes require strong pain killers which unfortunately have side effects as they weaken the body and may tend to be addictive.

“I got very painful joints and the wrists were swollen. I would go to the doctor who gave me injections which were not only painful, but also very expensive.”

“I also developed pain hip joint. It is so painful that it needs replacement. I can’t remember being pain free because pain has become part of my life.”

Current Treatment

Nanyondo has been using Hydroxyurea, a medicine for patients with SCD since 2014, and has had Red blood cell transfusions every month.

Her medication entails Acceclofenac for pain, Folic Acid, Omeprazole, Prednisolone.

Sick, but surviving

Nanyondo credited her mother for taking care of her.

“I thank God for giving me a caring and loving mother who has supported me. She has kept me strong and she’s the reason I am here right now.”

She also urged people to go for screening earlier so that they know their status to prevent giving birth to children with the disease. (Health experts explain that the only way to prevent SCD is through screening for the Sickle Cell Trait (SCT) of couples before having a child together.)

“People living with sickle cell disease should be strong and other people shouldn’t t traumatize them,” Nanyondo said.

It should be noted that the government, through the Ministry of Health and partners has intervened in reducing the sickle cell burden in Uganda, the most recent measure being the signing of a Memorandum of Understanding with Novartis, an International pharmaceutical company producing Hydroxyurea, a medicine for SCD.

The 5 year partnership will help in advancing care and treatment for SCD, the Ministry officials said.

 

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