Interview with OIFE Representative Rageema Livingstone, Representative of OIFE’s Associate Member South Africa

Who are you and what is your relationship to OI?

My name is Rageema Livingstone and I live with my husband and 3 kids in a suburban area of Cape Town South Africa. I have a 16 year old daughter with type 3 OI. I am also the chair and founder of Brittle Bones South Africa (SA).

Are there things you must struggle with in daily life?

I would say the most challenging areas in day-to-day life is worrying about my daughter’s safety travelling to and from school as well as the financial impact of special needs schools and medical treatments, medical equipment and being a mum of a teenager with OI which includes her own emotional struggles of daily life living with OI.

What do you do when you’re not doing OI-work?

When I am not busy with OI I work and spend time with family and friends. I love baking with the kids and playing board games. I also volunteer in community outreach programmes in impoverished /disadvantaged areas.

Tell us a little bit about the organization you represent

The organisation is called Brittle Bones SA and was founded in 2015 due to a lack of support and information regarding OI in South Africa. Currently there are over 300 members across South Africa most of which are people with OI. Brittle Bones SA is mainly run by volunteers.

Professor Shahida Moosa is the Head of Medical Genetics at Tygerberg Hospital in Cape Town. She has a special interest in the inherited disorders of bone, especially OI, and she discovered 2 new genes for OI during her PhD studies in Germany. Upon returning to South Africa, she established the Rare Disease Genomics research group at Stellenbosch University.

One of her first projects was to study the underlying genetic basis of OI in South African patients. Her MSc student, Kimberly Coetzer, was able to use the latest in genetic and genomic testing techniques to diagnose 48 South African patients with OI at Tygerberg Hospital. The study formed part of the group’s Undiagnosed Disease Programme, which includes all undiagnosed patients with suspected rare diseases, including OI. Prof Moosa believes that every person with OI needs a confirmed genetic diagnosis, and that this will increasingly become more important as newer therapies become available. She is an ardent supporter and advisor to Brittle Bones SA. Community engagement and education are vital, according to Moosa, and having support groups such as Brittle Bones SA as an integral partner in research and diagnostics is at the core of what drives the Rare Disease Genomics group.

In your opinion – what is the most important task for national OI organizations?

The most significant role of a national OI organisation is to assist communities in getting the proper support and education regarding OI and to also bring about awareness of this rare disease. Also to assist people to improve quality of life through education and proper treatment and medical devices needed.