My name is Justina Yiadom-Boakye, a mother to a child living with Osteogenesis Imperfecta. I am also the founder and the current President of OIF-Ghana, who recently became a member of the OIFE. Though it might be difficult to give the exact number of people living with the condition here in Ghana, however, using the statistical estimate of one out of every fifteen thousand people ratio, we estimate a total number of about two thousand people living with the condition in Ghana given our total population of about thirty million.

It can be hard for people with OI to find small enough wheelchairs in Ghana.

Some of the major challenges facing people living with the condition in Ghana includes the following:

  • Bisphosphonate drug Pamidronate is not readily available.
  • Mobility aids especially for their small sizes are not readily available and expensive.
  • Those we have identified currently have no form of corrective surgeries done for them. As a result of this, most of them have severe limbs and spine deformities.
  • Most of the children we have identified have been abandoned by their fathers, living the mothers to care for them on their own.

OIF Ghana was founded on 6th May, 2017. Our main mission is to improve the quality of life of people with OI in Ghana through Education, Awareness Creation, Treatments and Mutual support. We currently have seven OI children we are working with. Most of the people we have identified got to know of us through our limited awareness creation and publicity activities.

As a young institution, our biggest challenge has always been funding. This includes the following:

  • Funding for the medical cost of Pamidronate administration to the affected children identified.
  • Inadequate funding in executing our educational and awareness creation campaigns. across the country.
  • Unavailability of funds to assist affected children to have corrective surgeries on their severe limbs deformities.
  • We are currently in need of an office space to help us expand our operations.
Creating awareness on Wishbone Day

OIF Ghana has lined up a couple of projects it hopes to execute in the nearest future. Some of these projects are listed as follows:

  • To organize a large scale publicity campaign in Ghana aimed at educating Ghanaians about the condition and to seek better living conditions for people with OI with the relevant government bodies and agencies.
  • We look forward to train representatives’ volunteers across all the 16 regions of Ghana before the end of 2020 to help affected families in the respective regions.
  • To pursue for the setup of a medical team that will be in charge of handling OI cases in all the teaching Hospitals in Ghana.
  • Our greatest aspiration is to have a specialized OI clinic within the Central Regional Teaching Hospital where OI patients will be given proper care and attention every half year.
  • We also hope to put up a fund which will be used to assist OI patients financially with surgical operations. This is particularly dear to us because even though we have an orthopedic surgeon here in Ghana that can perform such surgeries, there are no funds to buy rods needed for the operation. We hope that with a fund set up if possible, we can assist affected individuals and their families to ease the expensive financial burden associated with OI surgeries. This fund will help us to hit our target of assisting in rodding at least a child each year.

Amongst our great successes, we are the first and only institution in Ghana that has brought OI to the limelight. Though the awareness on OI is very inadequate, we have been able to clear some doubts in the minds of most Ghanaians who supposed OI to be a ‘strange’ sickness. Considering the limited resources available to us, we can confidently refer to this as great success.

Creating awareness about OI on Wishbone Day

Also, another success we can boast of is that, all the children we have identified are put on Pamidronate infusion for free with all medical bills born by the organization. We have also provided mobility aids for such persons with the help of our cherished donors.

With all that have been said, we look forward to working with you closely to help build and grow our capacities as an infant organization to help give OI the attention it needs most especially in developing countries like Ghana.

Below you can meet our ambassador Ayeyi, who’s 8 years old, who was recently featured on BBC Africa.

The girl with brittle bones who loves to dance – BBC Africa Life Clinic

"I can't stretch my arms, but I can stretch my brain … so that I can do great things."Eight year-old Ayeyi has a condition that can cause bones to break at the slightest movement. But despite the pain a fracture brings, Ayeyi loves to dance and refuses to let her condition define her.

Gepostet von BBC News Africa am Dienstag, 5. November 2019