Living with Scleroderma

For 7 years I didn’t recognize who I saw in the mirror.

A jovial but busy Farah Khaleck sits at a quiet corner working on her laptop and answering calls in the ever ambient Baraza Media Lab in Riverside. She has recently launched her very own foundation which majors on supporting and empowering Kenyans living with rare diseases.

The 35-year-old suffers from Scleroderma, an autoimmune disease that causes the body to produce excess collagen leading to debilitating tightening and hardening of the skin and excruciating pain. “It all started when I was 18. I had just started my diploma and was on my first job as an administrator.” Farah narrates, “About 6 months into the job, my legs and thighs just suddenly started tightening and hardening and the skin on my knuckles started darkening. I went from being an active kid to slowing down to exhaustion.”

In the following days, her health continued to deteriorate and often her hands and body would be swollen when she woke up. As it became more alarming, her parents rushed her to a Nairobi hospital in a mode of panic. However, the general physician they found couldn’t tell what was happening with her body. So instead, he opted to give her thyroid medication to correct her thyroxine levels which seemed off but even that proved futile to her predicament. She was then referred to a specialist who conducted a myriad of tests and diagnosed Farah with Lupus, an autoimmune disorder as well. However, this was also a misdiagnosis and consequently caused a decline in her health.

Farah had now become sickly, her body had developed a different pigmentation, her intestines were stiffening causing her stomach to bloat and often she would vomit even those little portions of food she ate. She lost a lot of weight and was almost always in a great deal of pain. “At this point, I had gone to every doctor in Nairobi I could get and even just Kenya at large. I’ve taken every single medication you can think of. I even went to a Tanzanian doctor to get ‘dawa kienyeji’(herbal medicine) and I still didn’t get better,” says Farah Khaleck.

Coming from a conservative Islamic community, her family members had their own personal fears. As her condition got worse, Farah’s mother worried about her child’s health but she also had fears that Farah wouldn’t be able to be married off as was customary in their tradition. She didn’t think someone would accept her as a wife. Out of ignorance, some of her other relatives believed that her condition was black magic, a curse or generally a result of evil powers. As a result, she was exposed to rituals that did very little for her physical health but caused a strain to her mental health.

When push came to shove, a 21-year-old Farah and her parents decided to travel to India to seek further medical attention. When they got to India, the specialists did scores of tests running from the top of her head to the toes of her feet and at an exorbitant cost. It is at this point that the specialists conclusively confirmed that Farah was suffering from Scleroderma, an incurable autoimmune disorder. She was then prescribed steroids and told that they would help manage the disease. “ I was in total disbelief. I went to India expecting some form of hope. That I would be told what I have is common and perhaps I can get back to my normal self.” Farah narrates, “Instead, here was a doctor looking me straight in my eye and telling me I have a serious condition for life. I didn’t believe him.”

After spending 3 weeks in India, Farah and her parents came back home to Kenya. The whole family was still in denial and refused to believe that Farah was suffering from Scleroderma. Farah still took the steroids medication she had been prescribed and it appeared to work since it halted the acceleration of symptoms on Farah’s body. It is at this point that Farah’s life changed drastically as she shut herself out from the world completely. She had to quit her job and she also had to stop school as she couldn’t do basic tasks such as holding a pen and her mobility had greatly been reduced. She even quit social media as it was a source of sadness and bitterness. All she was seeing online were her friends and classmates doing great things and achieving big accomplishments, yet she was unable to get out of the house or do simple basic things she used to do easily; she couldn’t help but feel pity for herself.

After 9 months, she gave up and stopped taking the steroids medication then shortly after halted all medication she had been prescribed. At this point, her mental health had greatly declined and for the next 7 years, she was in a very dark place mentally. She hated herself, and everybody around her, and she lost interest in everything. She used to wake up every morning and when she looked in the mirror, she didn’t recognize who she saw, rather she hated whoever she saw. She had pent-up anger and aggression towards everybody. She couldn’t understand why she had to go through what she was going through yet a few years prior she felt normal.

One day while she was sleeping, Farah had a dream. In this dream, she was wearing a hijab over her head and she was happy. Immediately she woke up the next morning, she told her mother she wanted to wear a hijab. Her mother expressed her reservations warning her how serious a hijab is and she expressed her seriousness and sincerity to the Islam faith. The same day her mother bought her a hijab and once she wore it she rushed to the mirror. “ When I looked in the mirror, I smiled,” an emotional Farah says, “I loved what I saw and I could recognize the Farah I knew.” It was at this moment that Farah completely accepted herself and the condition she had. She also grew closer to the Muslim faith.

Farah then started interacting with the world once again. It was at this point that she did her very first interview. “After this interview, so many people reached out to me. Most wondered how I was so confident since they couldn’t speak in public. Hence why my foundation champions the message of self-acceptance and self-love.” Farah says. “ One highlight around this time is that BBC did a feature on me and I got the chance to tell my story.” Since then I have been telling my story and through my foundation, I hope to inspire many others to tell their stories.

Farah Khaleck, now a body positivity and self-love champion, runs her own foundation - The Farah Khaleck Foundation. A foundation with a vision to inspire and empower humanity at large. She says, “Life is the biggest gift and there is no single person who is not going through something. Everyone else is trying to conquer a special set of challenges that God has curated for them. Buckle up! Take a deep breath! And Live your best life!”