New OIFE member: Brittle Bones South Africa
By Rageema Livingstone, chair of Brittle Bones South Africa
Who are you and what is your relationship to OI?
My relationship with OI started nearly 12 years ago when my daughter was born with the condition. She is diagnosed as type 3 and currently wheelchair bound as she is experiencing bone thinning to the extent that her left femur is nearly completely gone. At birth she was misdiagnosed as type 2 and I was told she would pass away. After being diagnosed through the Red Cross as type 3 I became a sort of counsellor to new parents with OI kids this sparked the idea of starting a support group with has grown into a NPO: https://www.facebook.com/brittlebonessa/
How many people with OI does South Africa have?
At this stage I cannot give you an answer to how many OI people is in SA as hospitals cannot give me statistics as no one has been keeping a record and I am in the process of getting information from government hospitals so I can compile my own statistics.
Can you tell us about the situation for people with OI in SA?
Not many people are aware of the condition. My daughter attends the Red Cross Hospital here however most doctors have not dealt with the condition so they do not easily recognize it. There is currently only research into genetics as far as I am aware. Currently a case study is being done on my daughter by dentists as they have never dealt with dentogenesis before at government hospitals. I have not done research into private dentists as it is very costly and majority of patients cannot afford it.
Can you tell us about your organization? When was it founded? How is it managed?
My organisation has been around for about 5 years however it was only officially registered through government last year. I manage most of the day to day queries as well as setting up events and fundraisers. I have help through my family and friends. It is a struggle to get people involved sometimes, as most people expect a salary or money to be allocated to them if they assist in fundraising, which makes it very difficult.
How many members do you have? How do you recruit more members?
Currently we have over 100 members in our support group. We do posts on social media and through events and advertising on local media such as newspapers and radio stations we have managed to get into contact with more members.
What are the biggest challenge for your organization?
Our biggest challenge is funding which enables us to provide wheelchairs and medical equipment to families with OI as well as day to day costs of running the organisation. Another challenge is lack of education on the condition as members have many questions that doctors cannot always provide us with.
Do you have projects you want to tell us about? What is your biggest success?
I have lots of projects which I am working on, such as providing our patients with special personalised blankets. One of the local orthopaedic hospitals is close to my heart as my daughter had her rod put in there and I have regular drives to provide the hospital and patients with items they may need. In the past year we have helped 3 children with wheelchairs and I am currently busy with raising funds for another little girl to receive her chair. We have also assisted with families that could not meet the yearly fee of special needs school which is a bit costly here. I work with my daughter’s school in providing equipment to learners such as kaye walkers, splints and wheelchairs.
What are your plans for the future?
My future plans is to establish a better quality of life for OI in SA and Africa as a whole by helping to educating families and making medical professionals aware of this condition. Through projects I am working on I would like to create employment for special needs parents struggling and not able to go out and work.