Mother of three Tarela Aghanti has spent the last 18 years caring for her son who suffers from Osteogenesis Imperfecta, a condition known as brittle bone disease.
Undaunted by the overwhelming odds associated with the condition, Tarela has emerged as the leading advocate for the medical condition, following the publication of her bestselling book Unbreakable and the founding of the Osteogenesis Imperfecta Foundation Nigeria, OIFN, in 2016 to champion the cause.
On May 6, 2022, World’s Osteogenesis Imperfecta Awareness Day, she speaks extensively on OI, offering insights about the bone condition that any layman will find useful.
For those who have no idea about how to diagnose the condition, she opens an aperture: “Your doctor can diagnose brittle bone disease by taking X-rays. X-rays allow your doctor to see current and past broken bones. They also make it easier to view defects in the bones. Lab tests may be used to analyze the structure of your child’s collagen. In some cases, your doctor may want to do a skin punch biopsy. During this biopsy, the doctor will use a sharp, hollow tube to remove a small sample of your tissue. Genetic testing can be done to trace the source of any defective genes.”
Tarela did not attempt to downplay the hard fact about the condition. “There’s no cure for brittle bone disease,” she says pointedly but also underscores the fact that “there are supportive therapies that help reduce your child’s risk of broken bones and increase their quality of life.”
Treatments for brittle bone disease include physical and occupational therapy (to increase mobility and muscle strength), bisphosphonate medications (to strengthen your child’s bones and medicine to reduce any pain) and low-impact exercise to help build bone and surgery to place rods in bones, or reconstructive surgery to correct bone deformities.
She also mentions mental health counselling as a form of treatment therapy “to help treat issues with body image.”
Sharing further enlightenment on symptoms of OI, Tarela avows that symptoms of the disease differ according to individuals. “Every brittle bone sufferer has fragile bones, but the severity varies from person to person,” she says averring that symptoms could be any or combination of bone deformities, multiple broken bones, and loose joints, weak teeth, blue sclera (bluish colour in the white of the eye), bowed legs and arms, abnormal curve of the spine, early hearing loss, respiratory problems and heart defects.
Availability of treatment is hardly good news if it is not affordable to the average person. In the words of OIFN founder: “Medical treatment generally can be expensive; so can be the treatment for OI, especially, having to treat constant fractures. That is why the OIFN came into existence to step in, and support families suffering from this condition.”
Explaining the scope of support offered by OIFN, she says: “We give mobility equipment, six-monthly infusions to support the child’s fragile bones, the medication is called bisphosphonates drug which cost N20,000 per child excluding the one hour cost for hospital admission per child.”
Tarela Aghanti is not averse to sharing her personal experience with OI. “Everything is written in my book, Unbreakable which was published in 2021,” she affirms.
Having to deal with the brittle bone condition, she says, “can be very frustrating, especially if you don’t have good knowledge of what you are dealing with or if you have no support.”
This was the raison d’etre for her foundation. “OIFN has come to exist, to hold every OI family by the hand and walk their OI journey with them and to help ease the pain,” she articulates.
In supporting families and sufferers, OIFN, which she founded in 2016, raises awareness, helps with treatment and surgery.
“We connect patients with OI doctors both locally and internationally. We also connect OI patients. You can also check out our Facebook page and website www.oifnigeria.org,” she outlines.
Thus far, OIFN has been an impact charity organisation with its success as well as challenges.
“The biggest success story for the NGO is putting smiles on the faces of children and their families, bringing relief to their pain and giving them hope for life again by providing bisphosphonates medications to relieve pain and strengthen the quality of their bones,” she outlines.
Like every other corporate entity, OIFN’s biggest challenge is funding. “Running this magnitude of work on a charitable basis needs huge financial support and the lack of that has been a huge limitation,” she avers.
“Our work targets the poor, and the grassroots where we can make a huge change and difference in the lives of these children,” she adds.
OIFN, Tarela further avows, has been a conduit for individuals, organisations and government donors willing to support OI patients. “All funds received go directly to the cause,” she affirms.
To parents bearing the burden of children with brittle bones, Tarela Aghanti offers them optimism.
“We urge them to contact us if they feel like talking through their OI issue or they need a shoulder to lean on. if I can go through this and remain unbreakable you can also to it,” she says.
On the agenda ahead of the foundation, Tarela gives a broad insight: “We will take awareness to the next level by reaching out to children with OI in other states, and not just in Lagos alone. Next year, we will have a wheelchair distribution campaign in Delta State. And we will take the campaign to more hospitals. It’s a huge one and we are preparing for that.”
Tarela Aghanti is a mother, author and administrator. Her charity, Osteogenesis Imperfecta Foundation Nigeria, is an associate member of the Osteogenesis Imperfecta Federation Europe.