'It started with a feeling of stiffness in my legs': Farah Khaleck shares journey battling rare disease
Farah Khaleck. /COURTESY
It started with a feeling of stiffness in the legs when she was 18 years old.
As time passed, the effects of scleraderma, an autoimmune disease, took a toll on Farah Khaleck's body, causing inflammation and with it, her skin started to look and feel different.
"I felt like I was turning into a monster and didn't understand what was happening to me. Those were the darkest years of my life that I spent in anger, frustration and feeling broken," Khaleck said.
She spoke during a session where she shared her story, together with others living with rare diseases in a bid to raise awareness and call for support.
According to the National Institute of Health, scleroderma is an autoimmune connective tissue and rheumatic disease that causes inflammation in the skin and other areas of the body.
It explains, "When an immune response tricks tissues into thinking they are injured, it causes inflammation, and the body makes too much collagen, leading to scleroderma."
Khaleck said she did not know of anyone else suffering from the disease for several years, but when she shared her story for first time in 2015, she realised that there were other people in Nairobi going through the condition.
"I can't explain the joy I felt to know that someone else had a condition like me. I started to unravel that others were going through it. It gives me strength to share my story," she said.
Khaleck said her experience battling the disease was the inspiration behind her starting the Farah Foundation to raise awareness about the disease and bring together others going through it for support.
She says she has come to accept the changes in her appearance that have come with the disease,
"Today this is how I look like, but this is not the final version of me. Seeing differences as an asset allows us to create a more inclusive environment for all," Khaleck said.
However, one of the struggles that Khaleck and others go through living with a rare disease includes misdiagnosis - she lived for two years being misdiagnosed.
"I lived through misdiagnosis and after my diagnosis, it takes many specialists to attend to me and this comes with costs," she said.
Khaleck says even on diagnosis, the news was broken to her in an inhumane manner, which has led her to have doctor trauma.
"When they found what I had, they simply said, 'You have this disease and it's incurable so you need to take medication forever," she said.
Khaleck says that it is an every day journey living with scleraderma and although she has accepted the condition, it has taken a toll on her self-esteem.
However, she says, "We need to stop living in fear of stigma. I want to instil a sense of hope."
Some of the stigma Khaleck has had to encounter includes being told she might have been 'bewitched' and that is the cause of her condition.
Another problem has been nutrition because it is hard to swallow.
"The stem cell treatment I underwent has helped me with eating," Khaleck said, adding that she cannot eat hard foods and there are times she has had to take just liquids.
On the costs of managing a chronic disease, Khaleck says the costs have taken a toll on her family's finances, adding that she has relied on support from her parents and is often saddened by how much they have to sacrifice to take care of her.
"When I think about my fear, I don't even fear for myself, but rather for my parents because I live with them and I see how much they do to take care of me," Khaleck said.
She, however, said she sometimes gets worried about the loneliness that comes with dealing with a rare disease.
"I don't want to talk a lot about it, but it can get lonely and it makes me sad," Khaleck said.
She, however, emphasizes the importance of connecting with others going through a similar situation to provide hope.
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