Here's what people are saying about living with the disease

Europa

June 19, 2017 5:02 PM

Ghana joins the rest of the world to commemorate Sickle Cell Day, which falls on June 19 every year.

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Karen’s first pain crisis occurred when she was in Senior High school. Being born with sickle cell anaemia, she had experienced a lot of crises (painful episodes) at a younger age.

But the 25-year-old realised the enormity of her disease when she had her major crisis which affected her joints and got her admitted to the hospital for a long time.

Karen is not the only one in this condition. Her inherited blood disorder can cause stroke, pain, infections and other symptoms. Current statistics show that the prevalence rate for Sickle Cell Disease in Ghana is about 25 per cent and an estimated two per cent of births.

Red blood cells have the important job of delivering oxygen throughout the body. When a person has sickle cell disease, their red blood cells are a sickle shape and hence do not move through blood vessels as easily as normal red blood cells, which are rounder and more flexible.

Symptoms of the disease occur when the “sickle” cells are not able to deliver enough oxygen to the brain, bones, muscles, lungs and other parts.

Karen tells Pulse.com.ghhow she has managed to live with the disease.

“You have to drink lots of water. Take in a lot of water. You have to wear warm clothing not exposing your body to cover your joints and all that. And then also make sure you take in the regular folic acid and multivitamin and then sometimes add glucose to it,” she said.

She added that she sometimes “blends local garden eggs and vegetables.”

According to her, she goes for check-ups at the hospital – once in three months, with several of her medication being covered under the National Health Insurance Scheme (NHIS).

Health experts have also advised her to avoid walking in the rain, she says.

Karen’s story comes as Ghana joins the rest of the world to commemorate Sickle Cell Day, which falls on June 19 every year.

Since 2008, the World Sickle Cell Awareness Day has been held annually in order to help increase public knowledge and raise awareness of the disease and the struggles sufferers and their families go through.

The 25-year-old believes that the move has helped to reduce stigmatisation against people with the disorder.

She advised people to check their genotype before considering marriage in order to avoid the disease.

On his part, Michael said he has had to forego the love of his life because of the disorder.

“I’ve been through the battle of dating someone who is a sickle cell. It wasn’t easy at all but you have to run from it...You may really love the person but you get together with the person and the person is already sickle cell. When she grows older, you need to take extra care of the person.

“If the woman gives birth to another sickle cell and all the children become sickle cell, then frustration sets in,” the 24-year-old, who is an AS tells Pulse.com.gh.

He explained that being an AS, he does not get sick often, but when he does, “it’s a big deal.”

And for him, a day like this is so relevant as people will acquire more knowledge about the disorder and will in the long run “throw away stigmatisation.”

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