Makau Mulli, who has a condition known as fibromyalgia, speaks during an interview at The Standard offices. [PHOTO: DAVID GICHURU/Standard]
It's a scorching afternoon but he insists on carrying an umbrella wherever he goes.
This is not to shelter himself from the sun or for the unpredictable rain, but 25-year-old Makau Mulli uses it as a prop during episodic pains that migrate from one part of the body to another.
He has a nerve disorder known as fibromyalgia and the persistent shooting pains have interrupted both the academic and social life of this pious, bubbly and eloquent third year student of Bachelor of Management Information Technology.
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"The pains began 10 years ago in my abdomen and progressed to the back, knees and shoulder joints, disabling me momentarily and this continues until they go away 20 or so minutes later," Mulli described the pain attacks in an interview with The Standard.
Those pains have sent Mulli for diagnoses from one specialist to another and the hope for a painless tomorrow seems promising.
Last year, Mulli was diagnosed with fibromyalgia and is not only seeking to have a pain-control device implanted underneath his skin in the lower back, but is also keen to create awareness on this little-known condition.
"I want to create awareness on this painful condition that some people assume is fictitious. The pain is incapacitating, unpredictable and humiliating yet I do not want to be dependable on pain medicines, my elder brother, mother and friends anymore," said Mulli who was accompanied during the interview by a friend, Brenda Mutisya.
His mother, Mary Mulli, told The Standard that the cost of the array of pain medicines is weighing heavily on the family budget, with a pair of some of the eight tablets he takes daily costing Sh500 per tablet.
"When the pain strikes, he goes to his bedroom and cries until it's over because it knocks him out," she said, adding that the monthly budget is roughly Sh33,000 for the drugs and with no medical insurance to assist, it's overwhelming.
Fibromyalgia is derived from the Latin term for fibrous tissue (fibro) and the Greek ones for muscle (myo) and pain (algia) which translates to a condition that damages joints, muscles and other tissues.
Dr Kinoti Ndege, a physician at Kenyatta National Hospital, describes fibromyalgia as a chronic pain disorder with a negative effect on one's quality of life. The pain is felt in the neck, trunk and limb and may change in intensity from place to place.
His colleague at Aga Khan University Hospital, Dr Jacob Shabani, attributes the migratory pain to a miscommunication between the nerves and the brain.
According to Dr Shabani, the condition is triggered by life-changing events in the individual's life and the treatment module varies from one patient to another.
For Mulli, the specialists seek to implant a device below the skin in his lower back to systematically release painkillers targeting the pain hotspots in his body.
His friends are working towards raising Sh2 million to facilitate the treatment scheduled at the Aga Khan University Hospital early next month.
Mulli's treatment Pay Bill No: 530100 and the account name is MULI