Dancing for People with Haemophilia

Dancers from around South Africa gathered to compete in a bid to raise awareness about a bleeding disorder.

In aid of people with bleeding disorders, the regional Central Haemophilia Foundation hosted the Dance 4 PWH multi-style dance competition.

The competition was held at Northcliff Primary School and its purpose was to raise funds as well as awareness about haemophilia, a rare and inherited bleeding disorder that prevents blood from forming a stable clot.

A person with haemophilia has little or no clotting factor.Dancers from all over the country participated in the two-day competition.

Erica Bradley, a dance teacher, has a son with haemophilia. Along with her husband John, chairperson of the regional Central Haemophilia Foundation, the duo has been instrumental in spreading awareness about the rare bleeding disorder in Johannesburg.

Erica said that with over 50 million South Africans, there would be about 5 000 people in Johannesburg with bleeding disorders, and half of that number is not registered.

“It means half of those people are in the city and rural areas who have a bleeding disorder and might not know about it. We are not only trying to raise awareness in the community but with doctors and nurses as well because it is such a rare disorder,” she said.

John stressed that although it is challenging to have a child with a bleeding disorder, they can live normal lives and should not be treated like an egg.

With good management and proper medical treatment, those who have this disorder can participate in sports and other activities without being left behind by their peers.

Darren Allingham is an example of this and, at 19 years old, urged those like him not to be depressed about their circumstances. “Because my older cousin had it, my parents had me tested while I was in the womb so that helped them prepare,” said Allingham.

“Now I inject myself prophylactically [a preventative measure] every three days regardless of whether I have an issue.

Because I was a runner in high school, haemophilia did affect my quality of life as it affected my ankles. Although I don’t run anymore, I also participated in school hikes and other fun activities, except for rugby.

“I have always been able to do everything my peers did.”

With the help of the foundation, parents now have a place to turn to where other parents share their experiences of having children with bleeding disorders. Louise Ellwood has two children with bleeding disorders and is involved in the central region of the haemophilia foundation. She said they are there to support other parents

“It’s about awareness. Children are usually diagnosed at a very young age and parents tend to feel isolated and alone. So to have a foundation to turn to for support and create more awareness for other families in the community, can be very helpful.”

ALSO SEE: GALLERY: Dancers dance for Haemophilia awareness