Neuromyelitis optica: Disease that forces you to repurpose your life

Like all of us Jackline Mukami had expected a somewhat mundane life: get married, bear children, work and be happy.

She would be sick from usual suspects – malaria, common cold, bacterial infections and viruses. The kind of illnesses that go away with a dose of antibiotics, pain killers and good nutrition.

But instead, she got Neuromyelitis optica (NMO).

“The symptoms began in 2015. First, I lost my appetite. What followed was drastic loss of weight.”

“Then followed dehydration: I was constantly thirsty. I would drink water every few minutes,” she says.

Mukami is a clinical officer. She worked at a hospital in Kiambu County at the time. Being a medic she immediately suspected diabetes.

Then came lethargy. At which point she decided not to ignore the symptoms.

“I went to the lab at my hospital and requested for an ESR test – a test used to show that the body is not healthy. For healthy individuals, the results range from 4 to 20. Mine was 100.”

Mukami sought admission at the same hospital she worked. During that admission, one more symptom cropped up – vomiting.

“I could not contain food,” she says. “And this continued on for quite a while. I had to be admitted about five more times.”

In November 2015 she would be admitted for the seventh time – with more symptoms: including severe headaches.

“Before that admission, my family congregated for prayers; to cast out demons and repent the sins of our forefathers,” she says.

By this time Mukami had seen a general practitioner, who then referred her to a neurologist, who further referred her to a neuro-physician.

“Upon listening to my symptoms the neuro-physician pronounced that I had TB-meningitis. I was started on medication right away.”

She stayed in the hospital for three months; getting discharged in February of 2016.

Something else happened in the period of time Mukami was in the hospital: her limbs progressively got weak and spastic. Her muscles thawed.

“My hands were weak. I could not even hold a cup or feed myself. I had to be fed. My legs also got weak: I could not lift my left leg even by an inch. And when I was discharged I left the hospital in a wheelchair,” she says.

Throughout her stay in the hospital, Mukami believed she was sick from TB-meningitis.

She knew about her NMO diagnosis later when her HR manager asked for the doctor’s report as she geared to go back to work.

“The report read ‘Neuromyelitis optica’. My first reaction was: ‘What is this?’ I googled and started reading about it,” she says.

NMO, says Dr Erastus Amayo, a professor of medicine and neurology at the University of Nairobi, is an autoimmune disease where nerve cells get attacked by one’s own body’s immune system.

“The cells lose coating that protects each of them. This affects vision, creates loss of balance, lack of coordination and speech. The symptoms for each patient range from one to a combination of these,” Dr Amayo says.

He explains that the brain and the spinal cord are autonomous to the rest of the body. And it is the body that carries the immune system.

“We don’t know exactly how immune cells break the brain barrier then enter the nervous system: where they then attack nerve cells.”

So far, he says, there are theories suggesting that viral infections and low exposure to vitamin D, have something to do with it.

The disease has a strange and deep resemblance to multiple sclerosis (MS): so much so that patients have at times been misdiagnosed with either.

Take the case of Laura Musambayi; herself a medical doctor – at the National Spinal Injury Hospital.

From 2006 Laura believed that she was sick with – and was being treated for – multiple sclerosis.

“My diagnosis changed to NMO when I went to India in December 2018 to seek treatment,” she says.

Laura wanted to be treated with a drug that is yet to be available in Kenya. In India, her doctors performed diagnostic tests afresh.

“The test showed that I had NMO and not MS,” she states.

Symptoms for MS and NMO are identical. The difference between the two illnesses, says Dr Amayo, “is that MS affects cells in the brain and the spinal cord while NMO affects the spinal cord more than the brain.”

Both NMO and MS statistically affect more women than men.

The reported incidences of NMO in women is up to 10 times higher than in men while MS is two to three times common among women than in men.

Why? You may ask.

“Autoimmune diseases generally affect more women than men. We don’t know why this is so,” says Dr Amayo.

The two diseases completely interfere with one’s life plans.

After being discharged in 2016 Mukami signed up for regular physiotherapy; slowly regaining her motor functions to the point of walking again.

A year later, on January 2018, she had a relapse [an attack] that affected her eyesight.

“I had to get spectacles to improve my sight. And now I can’t see anything without them,” she says.

Mukami also lost her job as the hospital she worked for refused to renew her contract – placing strain on her family.

With each attack, Dr Amayo says, the symptoms get worse.

In Laura’s case, she first suffered from the disease as a 15-year-old in 2003.

“I remember all was well. I had a minor backache. The next day I woke up paralysed from my waist down,” Laura says.

She was admitted for months and underwent physiotherapy – regaining almost 100 per cent of her motor functions.

“Life went back to normal: like I had never been sick,” she says.

She had her first relapse in 2006 – three years later. That was the time she was diagnosed with MS.

“Between 2006 and now I have had several relapses. Progressively one of my legs has gotten weaker. I walk with difficulty and I can’t stand for long,” she says.

Every time there is a relapse MS and NMO patients get admitted at the hospital for a round of steroids – to suppress the immune system.

To prevent relapse, Dr Amayo says, Disease-modifying therapy (DMT) drugs would be the thing that does it.

“The only problem is that DMTs are unaffordable to the average family,” Dr Amayo says. “These drugs cost as high as Sh100, 000 per month: very few families can afford this.”

Being a civil servant the national health insurance NHIF caters for such medicine for Laura.

Not for Mukami though. NHIF does not cover medicine for some chronic illnesses like MS and NMO for the general public.

“I am spending close to Sh30, 000 a month for other medicine options. Soon I would not be able to afford this,” she says. “My prayer is that the government will make it easy for MS and NMO patients (who are not civil servants) to afford these medications.”

Both NMO and MS so far have no cure.