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Mashudu Mambo
PARENTS with children with fibromyalgia are hosting an awareness campaign on Saturday at Cillas Conference Centre in Bulawayo to demystify myths associated with the condition.
Fibromyalgia is a chronic condition characterised by musculoskeletal pain, fatigue, and sleep disturbances. The condition affects one in every 20 people and is prevalent in women.
May is fibromyalgia awareness month and the event is celebrated annually to spread awareness of the condition and chronic diseases. The co-ordinator and mother of a child with the condition, Tendai Moyo, said their goal is to bring to light the conditions that are unknown to the community.
“The theme of the event is “Rare and Gifted” which speaks to raising awareness of the rare diseases in communities. The goal is to present the plight of women who are primary caregivers and to highlight the challenges that they encounter in dealing with children,” said Moyo.
She stated that her daughter has been suffering from the condition for the past five years.
“My daughter has been affected by this condition for the past five years and the journey to diagnosis has been long and challenging. Many doctors could not identify the condition despite prescribing several medical tests,” she said.
Moyo said the challenge started when her daughter had a head injury.
“It all started when my daughter had a head injury after one of the kids at her former school knocked her down while riding a bicycle. She had several nose bleeding episodes and headaches, the doctors suggested a CT scan (imaging test that helps healthcare providers detect injuries) but nothing was found and the nose bleeding, dizzy, and headaches continued. The doctors then prescribed a head MRI scan (a painless test that produces very clear images of the structures inside of your head) which costs US$1 000 but nothing was detected,” she said.
Moyo said her daughter was constantly prescribed antibiotics which were inefficient in dealing with the condition.
“For years, she kept being prescribed painkillers and antibiotics that were not effective, she developed stomach pains and vomiting each time she ate and was almost operated on the assumption that she had appendicitis. We had to do a CT abdomen scan (test that uses x-rays to create cross-sectional pictures of the belly area) and it proved otherwise.
“A close family friend advised us to engage an expert dietician who helped us identify the correct diet for her and noticed that the antibiotics had damaged her stomach lining. The doctor came to the conclusion that the symptoms needed a paediatric rheumatologist. This was after five years of going from one test and spending close to US$3 000,” she said.
Moyo stated their journey has taught them resilience and empathy.
“Pain medications on her are a trial and error as some of the tablets do not work. I have become an advocate for my daughter, fighting for her care and educating our community about fibromyalgia,” she said.
Online Reporter