Hellen Nyanchama is grappling with the effects of a very rare disease. She shares with JECKONIA OTIENO her battle with Guillain-Barre Syndrome.
Her smile doesn’t fade even as she labours to use the walker to move. Though she spends most of her days confined to a bed, the 28-year-old believes her worst days are behind her.
Seven days in a hospital’s high dependency unit (HDU) and 72 days in the intensive care unit (ICU) marked the second half of 2017 for Hellen Nyanchama. Her path to recovery would leave in its trail a whopping Sh7.2 million medical bill of which, only Sh1.2 million has been paid since she left the hospital.
During the interview, her mother, Miriam Manuwari looks on calmly, barely interrupting the conversation with her daughter. And when I draw her in, she explains how it all began like a joke.
„Nyanchama started complaining of aching legs and fatigue. I thought she was anaemic. We took her to a private health facility in Ruai where she got some medication and we thought that was it,” she explains.
At the beginning, Guillain-Barre Syndrome (GBS) causes weakness and tingling sensations in extreme parts of the limbs. Without treatment, the sensations quickly spread and eventually paralyse the whole body. This happens because the immune system attacks healthy nerve cells. Its cause is yet to be discovered but is set off by infectious illnesses such as stomach flu or lung infection.
A few months later, Nyanchama started experiencing stomach upsets which doctors thought was due to excess acid but after treatment, her condition deteriorated. She was vomiting and couldn’t sit or walk.
Then one day, things took a turn for the worse.
“I had left her in bed one morning and was preparing to step out and attend to a few chores when I heard blood-chilling grunts from the bedroom. When I ran in, I found her convulsing,” Miriam says.
They quickly rushed the unconscious Nyanchami to Mama Lucy Hospital. After a series of tests, no ailment was found and the doctors advised that she be taken to another hospital as nurses were also on strike.
Expensive treatment She later regained consciousness but had lost all motor coordination of her limbs. Then while resting at home, she started chocking and so they rushed her to another city hospital where she was put on oxygen.
With no visible improvement, the family was advised to transfer her to another hospital that required Sh100,000 deposit before admission to HDU. “She was admitted with an agreement that the amount would be paid within the day.”
After several diagnostic tests, the doctor confirmed that Nyanchama had GBS.
With her condition getting worse, the doctor referred her to the ICU at Kenyatta National Hospital. But that plan was halted when Nyanchama slipped into a coma and couldn’t be transferred in that state that lasted for 72 days.
“For those 72 days, her bed costs were Sh100,000 per day. An injection per day would cost Sh175,000. The final tally was at Sh8.3 million. The family managed to pay Sh1.7 million. Part of this, Sh300,000 was paid off by NHIF.
Nyanchama was recovering, and to reduce the medical bills, the family begged to have her convalesce at home. The hospital gave them a year to clear the debt.
“We are now depending on well-wishers to help us,“ interjects Nyanchama’s father who had by then joined us.
Two months ago, Nyanchama was back in hospital for a bile reflux condition that saw her admitted for four weeks.
Today, the young jolly woman is glad to be home and hoping for dull recovery.
“A physiotherapist comes over three times a week to help me restore limb mobility. A session costs Sh1,300. We also spend Sh16,000 on drugs every month. I always need people to help me out at home and at the Kenyatta National Hospital where I attend some clinics.“
Despite all the challenges, she is looking forward to living a full life. “I can’t wait to get back to class, clear my degree course and get a master’s degree in guidance and counseling,” she says.