I used to be a worshipper - Henry Budohi explains rare syndrome that paralysed him [Video]

#PulseYouthMtaani features Henry Budohi, his life could go back to normal after living with paralysis for 4 years, he only needs to access treatment

#PulseSpotlight - The story of Henry Budohi Kisaka, seeking treatment for Guillain-Barré Syndrome (GBS)

"Imagine I used to be a worshipper, I used to lead praise and worship...before all this," Henry reminisces as we begin our interview at his house in Nairobi's Kibera area.

Mr Henry Budohi Kisaka is living with a rare condition that has confined him to his bed for four years. Aside from his desire to regain his health, Henry tells this writer that he mostly wants to get back to his usual self - able to do things unassisted, strong, running his businesses and involved in the community as he was before the disease.

Budohi first experienced the symptoms of Guillain-Barré Syndrome (GBS) on December 31, 2018 and is seeking critical treatment that will see him get back to normal - reversing paralysis that makes him bedridden.

"I was very much okay that day, I had spent my day very well. I'd hosted visitors and even cooked for them but at around 8:00 p.m, as I prepared to leave for a kesha, I tried to stand up and I could not feel my legs. It was very shocking and I thought maybe I'd not been sitting in a good position. After some hours, some friends tried to help me stand up by supporting me but I fell and passed out," Henry narrated.

Though rare (1 in 100,000 people), GBS can affect anyone - man or woman - at any age, and researchers are yet to identify a cause or why some people get it and others don't.

The immune system of a person suffering from the condition mistakenly attacks nerves outside the brain and spinal cord causing weakness, paralysis and in advanced cases, a person may not be able to breathe independently. Henry has been admitted to the ICU from complications of GBS.

GBS tends to occur after the body has battled an infection where its immune system was triggered. In Henry's case, after December 31 the incidents of numbness were episodic, he did not seek medical attention until some time later when there was blood present in stool and vomit.

"It [the numbness] kept on happening to the extent that I could not feel my legs anymore. Actually, what made me go to hospital is that I started passing bloody stool and puking blood so my neighbours rushed me to hospital," Budohi recalls. It is this network of neighbours, family and friends who are rallying well-wishers to come to his aid.

At the hospital, Henry would be diagnosed and treated for serious digestive tract infections - H.Pylori, typhoid, amoeba as well as chronic stomach ulcers.

After recovering from the infections, Henry began treatment for GBS under the care of doctors in the Department of Neurology at the Kenyatta National Hospital (KNH).

Henry narrates that since his first instance, the paralysis has spread and he has now lost feeling in his left arm. In the duration of our interview, Mr Budohi held a spongy ball with his left hand as part of his physiotherapy.

Most people will eventually recover from GBS with treatment interventions. In Henry's case, and after further consultations with doctors in India, there's a treatment available to speed up his recovery within two months.

"The challenge came when I could not access a drug that could have been administered in the early stages [to stop the disease].

"We sent my medical reports to India... the doctors here could only prescribe physiotherapy and medicine to just keep me moving not the treatment that can completely heal me... some even asked me to just accept myself and the wheelchair life... but I'd seen medical reports that my condition could be reversed and the results from India came back in a positive way. It's something they can handle in 30-60 days and I'll get back to normal," Henry explained.

He estimates the cost of his daily care at Sh3,000 ($24.99) and the cumulative cost of managing his condition so far at more than Sh3 million.

"It's been a long journey... I'm really grateful to the people who have come through, especially given that this disease came during that Covid period when it was really challenging for people to support me. It's now a very big challenge for me to manage this.

"This is to all well-wishers out there, I'm really suffering, I really need your help to raise Sh4.5 million for me to travel to India," Henry appeals.

You can reach Henry through his social media platforms where he creates content raising awareness around GBS. For donations, M-Pesa PayBill 8041469, Account Name HENRY.

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