In January 2022 a new multidisciplinary (MDT) clinic for osteogenesis imperfecta was established in Ghana. We did an interview with the initiator and woman behind it – Mrs. Justina Yiadom-Boakye, the president and Founder of OIFE’s associate Member Ghana (OIF Ghana).

Justina and her daughter

Who are you and what is your relationship with OI?

I am Mrs Justina Yiadom-Boakye, a mother of three wonderful girls. My first child has Osteogenesis Imperfecta, also called Brittle Bone Disease. Having had this experience, having seen what I went through, I had the desire to set up a foundation and help other mothers of children with this condition.

What is the situation for children with OI in Ghana?

As with every child with sickness, they don’t have it all rosy. There is a challenge with raising nationwide awareness of the condition OI. Then again, management of such children at home and at some facilities poses a problem due to little or no knowledge about the condition and its management. Some OI-children also die at the early phases of life from varied causes, especially pulmonary complications.

OIF Ghana works in collaboration with Cape Coast Teaching Hospital and most of the activities in terms of healthcare are centred around this hospital. For patients to receive health care from OIF Ghana, patients have to travel to this city from wherever they are to access healthcare. This is a major challenge for patients depending on the distance. Another major challenge is funding, as resources are limited, to help push objectives of the foundation for the benefit of the OI children we cater for.

Tell us about your new MDT clinic!

Doctor doing an eye test with a girl who has OIIt’s dubbed the Osteogenesis Imperfecta (OI) Clinic set up in collaboration with Cape Coast Teaching Hospital. The team of specialists have been put together to ascertain and manage the psychosocial and medical needs of these children. We are in the first year and have already had the first edition of the clinic in January. It’s now established to be run on a quarterly basis per year. It’s a day clinic after which a round table discussion is done to discuss each patient and the necessary treatment modalities to be done.

Professionals involved are Consultant Paediatrician, Specialist Paediatrician, Specialist Orthopaedic Surgeon, Specialist Ophthalmologist, Specialist ENT, Specialist Dental Surgeon, Specialist Radiologist, Physiotherapist, Occupational Therapist, and Clinical Psychologist.

Alongside this clinic, patients are scheduled to have their bisphosphonate therapy, which is done a day before the clinic day.

As such, patients are housed privately and are transported to the hospital for their bisphosphonate therapy. They are taken back to the foundation’s facility and then taken back the next day for the clinic.

How did you establish it?

Medical staff taking x-ray of a baby with OIHaving a child with OI, I have had the privilege of having medical care from Shriners Hospital for Children in Canada. Having observed proceedings as we were being attended to, I had the desire to replicate that in Ghana, my mother nation, having seen the effectiveness of having been subject to the system. Due to that, we had a lot of discussions with the leaders of the Cape Coast Teaching Hospital over a period of time. Finally, we were able to set it up and even have our first clinic in 2022.

How do you educate your new professionals in OI?

The foundation has international collaboration with sister western stakeholders like Shriners Hospital for Children, OIFE, OIF USA and others. Through these contacts we established links for in service training for these professionals, especially towards the management of OI and its comorbidities.

How do you spread awareness about the clinic?

The clinic is yet to be publicized with plans to formally unveil it on Wishbone Day here in Ghana, publicizing in on TV, radio and Internet nationwide

Any messages to the OIFE Magazine?

I’m grateful for this interview to talk about this new initiative and I’m grateful to the team and leaders of Cape Coast Teaching Hospital, Cape Coast, Ghana for helping establish this initiative. It’s my hope that it stays, and I would also take this opportunity to make an appeal to the international community for funding to help push this initiative and help in its sustainability for the benefit of the OI kids we cater for.

This article was first published in OIFE Magazine 1-2022.