One family in Gatitu, Nyeri County has great memories of Queen Elizabeth II. When the monarch came to Kenya on a State visit in 1983, six-year-old Ann Nyambura Waweru presented her with flowers.
“I was so excited, my mother was a lecturer at Kenya Polytechnic at the time and she coached me on how to present the flowers, giving me strict instructions on how to walk towards the queen and curtsy,” recalls Nyambura who walked towards the monarch as a crowd cheered.
“I was so nervous, and when I got closer to her, the flashing lights of cameras stunned me and I froze, but she smiled down at me and I was immediately at ease, she took the flowers and thanked me, before she was ushered past me,” says Nyambura who now suffers from multiple sclerosis.
She ambles slowly with a walking aid, but her bright smile and confident disposition are still intact.
For the last 14 years, Nyambura has been living with multiple sclerosis (MS), a condition that drastically changed her life.
The symptoms started at age 11 when she felt a tingling sensation through her spine that felt like shocking vibrations. She ignored what appeared like a minor thing. But the second symptoms came when she was in high school; she felt the loss of sensation in her fingers. They became numb.
“It did not seem normal. My parents took me to the doctor who said I was simply stressed, and prescribed ‘Valium’ and instructed me to take life easy, and relax. The numbness would pass.
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But the symptoms recurred on her left hand a few months later and “I was once again told by doctors it was stress and they prescribed the same medication to calm me down, but it did not work.”
That was the beginning of Nyambura’s journey in and out of hospitals with the condition spreading to her left leg. She could barely move.
Doctors told her to lose weight as “they believed I was overweight, that my mass was affecting my spine.”
She lost weight after five weeks of working out but her body got so weak, she could not stand or walk on her own.
“They told me to go home and keep on with the physiotherapy but a second opinion diagnosed it as MS” in 2008 when the long journey to understanding her condition started.
The first step to management was putting her on steroid medications which have various side effects including diabetes.
Nyambura does not know what caused MS, just that her specific condition is termed a ‘relapsing-remitting MS.’
“I experience periods of new symptoms or relapses that develop over days or weeks and usually improve partially or completely,” she offers. “My relapses are followed by quiet periods of disease remission that can last for a while.”
MS, she now says, occurs when the immune system attacks the protective sheath that covers nerves and causes communication problems between your brain and the rest of your body.
Due to her condition, she has to rely on family and friends to carry out day-to-day tasks and sometimes spends long periods in hospital.
“It affected me emotionally, because it is very hard to accept that there is no cure, and the things I used to do and enjoy are beyond reach,” she says.
But she has since joined an MS support group in Nairobi where members meet regularly to share experiences and information.
“The group had over 200 people but after Covid-19, we lost touch and I wasn’t able to attend the meetings, we now only communicate on online platforms,” says Nyambura who relies mostly on the support from her family.
Her father, Joseph Waweru, describes her as a blessing for remaining positive and generous despite years of living with MS.
“All these years she has found a reason to smile and give her best even when the going gets tough for us,” says Waweru, adding that MS is a rare disease in Kenya which explains why the family kept receiving several misdiagnoses.
“They gave her steroids which helped her stand for a while, unfortunately, she developed diabetes which was a side effect of the drugs,” he said.
Among alternative therapies the family sought include natural remedies through diet and cutting down on processed foods.
“Managing her condition through lifestyle changes really helped her improve but the MS has caused a lot of damage and she did not recover fully,” explains Waweru.
He adds that MS is not genetic as the family has no history of the condition and there is need to create awareness to save patients from misdiagnosis and to assist with health care.