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ELECTION 2022

My battle with rare Guillain-Barré syndrome

SUNDAY MAGAZINE
By Agnes Aineah | Jun 23rd 2019 | 4 min read
Twenty-six-year-old Henry Kisaka has been bedridden for months, battling pain and unable to afford decent medication for a rare autoimmune disorder.

My problems began in 2013 when I was diagnosed with ulcers after I suffered persistent stomach pain. I was treated and given medication to manage the condition.

I was still battling the ulcers when I started experiencing chest pains and a burning sensation in my right leg. Also, I started nose bleeding heavily. Without a stable income, I endured the pain as I had no money to see a doctor. Before long, my right leg became paralysed and I was stuck in bed, unable to move. Word reached my family in Vihiga that I was seriously sick and they came to Nairobi to take me home.

They took me to a hospital in Kisumu where tests revealed that I had a hole in my heart, about two centimetres wide. To everyone’s shock, medics explained that the hole had been there all my life and ruled out surgery, saying that it would lead to complications since I was already an adult. I was 20 then. I remained bedridden for months, taking the medicines the hospital prescribed. Then one day I just woke up and started walking again. I still consider it a miracle as it happened so instantly. The chest pains also died down. Considering myself in good health, I travelled back to Nairobi, took a loan and resumed my business.

Resurgence

I thought everything was fine until towards the end of last year when my health took a nosedive, and it was worse than the first time.

It was around 8pm when I was preparing for the New Year church vigil when I felt a sharp pain on my back and passed out, falling in a seat in front of me. I didn’t regain consciousness until it was around 2am. All of my body was painful. Additionally, I wasn‘t doing too well financially and for the next three weeks, I didn’t take any medicine. Not even painkillers. Then I started vomiting blood and passing bloody diarrhoea and It was then I began panicking. The thought of calling my folks in the village to say that I was sick again scared me. I had received reports that my mother was also paralysed and that our family needed money for her medication. So I chose to keep my sickness to myself.

In February, I started having convulsions. My neighbours thought I was going to die. Besides the severe stomach and back pains, I also started having difficulties speaking because of facial paralysis. Additionally, my legs started going numb and I couldn’t lift them. My neighbours took me to a hospital where I was checked into the emergency section. Tests at the hospital revealed that I had typhoid and ulcers. Doctors blamed the back pains on the typhoid and prescribed a 21-day medication.

Struggle to live

I was wheeled back to the hospital at the end of the 21 days. The doctor was suspicious of my inability to walk and recommended an MRI among others. The MRI results indicated that I had GBS (Guillain-Barré syndrome). I remember the doctor shaking his head sadly, at pains to break the news to me. I was however ready to know the cause of my pain. The doctor explained that I had a rare condition that was eating my immune system and that I needed a neurosurgeon to start tending to me that moment. He referred me to Aga Khan Hospital but I didn’t have the money they asked for. I had  borrowed heavily for my medication. I got a PayBill number to raise funds but I didn‘t get the amount needed for the treatment. Frustrated, I went back home despite the doctor’s warning that I needed to be admitted to a hospital immediately. That was March and that was my last visit to a hospital.

I take the pain everyday hoping that I will one day find means to access treatment. I now rely on medicines bought over the counter to ease my pain and treat my nerves. But my condition seems to be getting worse by the day. I am now paralysed all over, from my waist downwards. Recently, I also started feeling some tingling in my left hand. My stomach pains are usually severe whenever I eat anything. I therefore eat very little despite having good appetite. Besides this, I sometimes experience shortness of breath.

Urinating has become a very painful process for me. I sometimes feel my bladder full but the urine just doesn’t come out. It is usually accompanied by excruciating pain when it eventually comes out. And I have passed stool only three times since March when I was treated for severe diarrhoea.

My biggest support is my cousin Ian who has been doing everything for me, including bathing me. He is always on the internet, telling my story to well-wishers who help with our food and bills. But my greatest source of strength is God. I know that God can heal me because He has done it before.

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