Pauline Gatwiri: My rare condition requires a Sh80,000 jab every quarter

For 26-year-old Pauline Gatwiri, her life has been one battle after another trying to seek treatment for a condition few people have heard about or experienced.

In her home at Chiara Village in Abothuguchi West ward  in Meru County, Gatwiri is suffering from Multiple Sclerosis (MS), a rare condition where her immune system attacks the brain and the spinal cord.

Gatwiri relies heavily on her husband John Muthuri for day-to-day assistance especially when the disease flares up and makes it difficult to move parts of her body.

“Today I feel a bit better, I am able to do several chores around the house, but my husband really helps me when I can't move,” she said.

The mother of two started experiencing symptoms of MS in 2016 but after visiting several hospitals she was misdiagnosed with different types of diseases and getting treatment for the wrong illnesses until 2021 when she was diagnosed with Multiple Sclerosis.

“Since 2021, I have been receiving treatment for the disease but unfortunately the medication has not been effective and the doctors are considering a different cause of action,” she said.

Gatwiri’s doctors have recommended an injection that will require four doses at three-month intervals but this injection is expensive and she cannot afford it as each injection costs Sh80,000 and she and her husband are unemployed.

“I have the National Health Insurance Cover but it has not been helpful since it does not cover anything related to this disease, my medical expenses have been out of pocket,” she said.

As her primary caregiver, Muthuri said caring for his wife has not been easy since she started experiencing attacks that make parts of her body go numb.

“On four occasions I found my wife had burns on her hands which she sustained while cooking and this worried me so I decided to stay close to her throughout the day and this means I cannot sustain a job,” he said.

Muthuri tends to every house chore and he explains that he cannot risk leaving his wife alone even for a day.

“The symptoms got worse when Gatwiri gave birth to our second child and the attacks increased and we had to go from one hospital to the next trying to find answers as to what was wrong with her,” he said.

For now, Muthuri and Gatwiri rely on well-wishers for their day-to-day needs even as Muthuri works casual jobs on neighbouring farms.

“We are unable to afford the medication that can allow us to manage this condition and we fear it might become unmanageable,” Gatwiri said.

According to Dr. Bundi Karau, a Clinical Neuroscientist, Multiple Sclerosis is considered rare because few doctors can diagnose the disease.

“For a proper diagnosis it is important to get several tests including a brain MRI scan to determine whether a patient has the disease because normal CT scans cannot detect it,” he said.

Dr Karau said many people are living with the disease unknowingly and many are receiving misdiagnosis and treatment for the wrong disease.
“Often the symptoms for multiple sclerosis can be mistaken for stroke and other diseases,” he said.

The neurologist said the treatment is equally expensive and most patients can’t afford it and therefore delay treatment which can lead to permanent damage or disability.

“Some tests for the disease are very expensive due to the nature in which they are conducted, some tests are required to be shipped out of the countries which have the equipment to conduct accurate diagnosis,” he said.

Dr Karau blamed climate change for the increasing cases of multiple sclerosis in Kenya because initially it was thought to be common in the temperate regions but now it is found even in the tropics.