'I once couldn’t walk or talk, now I can run and sing'

Joy Lwangu is full of life. The 40-year-old is all smiles as she arrives at Nation Centre for this interview .

 What's even more remarkable is that she made the journey alone from her home in Jericho Estate, located on the outskirts of Nairobi, to the city centre.

 That would not have been possible before June last year. She could hardly walk, until she underwent a life-changing surgery.

Trouble started in 2019 when Joy was diagnosed with stiff person syndrome (SPS), a neurological disorder characterised by muscle stiffness and spasms that led to persistent, incapacitating pain.

 Joy experienced severe symptoms of this rare condition, which left her unable to speak, walk, or engage in day-to-day activities.

 “Because of the stiffness I had in my chest and trunk, my vocal muscles experienced spasms, rendering me largely voiceless, and on the rare occasions when I was able to speak, my voice was significantly low-pitched, and even then, articulating words was a strenuous endeavour,” she explains.

 She couldn’t naturally fall asleep and relied on strong painkillers to induce sleep. Apart from that, her eyes, ears and skin were hypersensitive.

 This forced her to wear prescription polarised glasses to manage light sensitivity, sound-blocking headphones to minimise auditory stimuli, and she carefully selected clothes and bed sheets that would not aggravate her skin. She had to rely on a caregiver for assistance with daily tasks as she primarily communicated through texting and emailing.

 Joy was under regular treatment with different doctors and specialists since 2011, but this was for different symptoms.

 “Although a cyst was discovered in my spinal cord, it was determined to be responsible for only 20 per cent of my issues and so I was referred to a neurologist for additional evaluation.”

As her symptoms worsened from 2015 to 2016, she consulted a neurosurgeon at Coptic Hospital in Nairobi, who attributed all the symptoms to a single condition - SPS.

 In 2019, she was diagnosed with SPS at Kenyatta National Hospital and placed on medication.

 By early 2021, oral medication and weekly emergency visits proved ineffective in managing the symptoms. As a result, the medical team treating her prescribed intravenous immunoglobulin treatment.

 Upon further evaluation, she was informed that monthly infusions would be necessary to halt the advancement of the disease, in addition to the oral medication regimen. Oral medication could cost between Sh18,000 and Sh25,000 per month.

 But her story changed in June last year, when she underwent shoulder surgery to treat muscle tears caused by muscle spasms. 

 "In November 2022, I had sustained severe injuries throughout my entire right side due to spasms and convulsions that were triggered from my eye down to my foot,” she explains.

The surgery was done by a team consisting of two neurologists, two surgeons, an opthalmologist, a rheumatologist, orthopedic surgeon, general trauma surgeon, physiotherapist and neurologist, among other medical experts.

 "I needed intensive physiotherapy, medication and surgery to regain my ability to walk, eat, and speak," she explains.

 Currently, Joy is in a medicated remission, which means her symptoms are fully under control if she takes her medication.

 Unlike before, she is now fully self-reliant. However, she is on strong muscle relaxants like Keppra, baclofen, tizanidine, and other nerve medications, and any time she misses them, SPS symptoms arise.

 “I have had regular tests to keep track of function and so long as I stick to the medication regimen, I am having less and less spasms, stiffness, and pain, and thus I am able to talk, walk, see, and even eat,” she adds. 

 The surgery cost her 600,000. But the total amount, including admission fee and treatment, which helped her get back on her feet, cost Sh2.4 million. Further, drugs, physiotherapy, and consultation cost her Sh25,000 monthly.

 “I managed to pay the hospital bill, thanks to my alumni from Moi Girls School and the University of Nairobi, who raised cash for me to get treatment.”

 But still, there are other costs. "Currently, I skip physiotherapy and consultations because of financial challenges and most times I am forced to choose which medication to buy. Also, at times some drugs can be out of stock for months,”

 According to the National Organisation of Rare Disorders, stiff person syndrome is estimated to occur in one to two cases per one million people, with an annual incidence of one case per one million.

Prof Erastus Olonde Amayo, a neurologist based in Nairobi, says while local data is not readily available, a number of patients have been observed by local neurologists. “No data has been collected in the country so far.”

According to the expert, currently medical professionals use therapeutic interventions that focus on alleviating symptoms and regulating the autoimmune response.

 Although Joy is yet to return to work, she is actively running her social enterprise, where she collaborates with individuals with rare conditions and engages with youth in her community.

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