MEMBERS

Meet OIF Ghana

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

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EDITORIALS

The Voice of People with OI

February’s OIFE Magazine main topic is research and I could have called this editorial “The patients’ voice”. But to be honest, I’m not too fond of the term patients. Patients belong in hospitals. The OIFE represents people with OI and families, who most of the time live active and meaningful lives outside hospital walls.

There are however many ongoing initiatives that include patients in one way or another: Patient involvement in research, patient centred outcome measures, patient reported data, patient priorities in research and I could go on and on. Many stakeholders want to hear our voice these days. Both because they are interested, but also to secure funding or to get approval from authorities.

Some studies are putting the patients to work, by using data that patients are providing themselves. Both the RUDY study and Rare Commons are mostly based on patient reported data. And, why not? We are the real experts, right? Yes, but not always. If terminology is not understood before the questions are answered online, results can be imprecise and sometimes completely misleading. The Adult History Study from the US showed for instance, that many don’t know or understand their own type of OI. And using severity doesn’t necessarily help. A person with mild OI who has severe pain, or who has become deaf, might regard his OI as more severe than an otherwise healthy wheelchair user with OI type III.

“By engaging the end users of study results throughout the research process, we are more likely to focus on asking the right questions, study the outcomes that matter most to patients, and produce the useful and relevant results that are more likely to be used in practice.”

Patient-Centred Outcome Research Institute (PCORI)

 

So why is our voice important? The most known impact of OI is fractures. But there can also be wide-ranging systemic, psychological, emotional and social effects of both the diagnosis and its treatment. Objective tests or examinations might be inadequate to understand the impact of OI on a person’s health, function or quality of life. This can lead to a mismatch between the person’s priorities and perspective and the efforts of clinicians and other stakeholders.

The ‘patient voice’ can contribute in priority setting as well as influencing health policy in a wider perspective. The patient organisations can encourage clinicians and researchers to do more research in OI. And some foundations provide grants, like Care 4 Brittle Bones and Fundacion Ahuce. As an umbrella, OIFE can contribute with advice, because of our overview and big network. We can also create arenas for connecting and getting different stakeholders together.

So what does the voice of the patients say? I’m pretty sure it depends on whom you ask. The father of three years old Marko with OI type III from Croatia, will give you a totally different answer than Olga 54 with type V from Estonia. And Peter with type I who has recently become deaf, will have other priorities than Martha, with a femur fracture that won’t heal.

How do we make sure that the organisations really represent the voice of people with OI? The simple answer is that we have to work together. The OIFE member organizations need to be informed about the new trends regarding patient involvement. Tools must be developed to gather opinions from the community, like focus groups, queries, panels and webinars. We also need to educate patient experts with OI to meet the constantly increasing need for patient voices in research projects, in European Reference Networks (ERNs) and in consultations with health authorities and policy makers on both national and international level.

“Patient involvement in research needs to be taken to the next level. Rare Disease Day 2018 offers participants the opportunity to be part of a global call on policy makers, researchers, companies and healthcare professionals to increasingly and more effectively involve patients in rare disease research.” – EURORDIS

Rare Disease Day 2018 took place one month ago and the topic was research. Some of you were perhaps attending national RDD events. OIFE was represented at the European Parliament in Brussels where BOND-ERN’s launched a report on diagnostic challenges in OI. No matter what you did – I hope you had an interesting Rare Disease Day. As you all know – it’s only a warm up to Wishbone Day!

 

Rare greetings from Ingunn

OIFE president

 

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