Johannesburg - Acclaimed local television personality Stephanie Be (Barnardt) has for years suffered from rare disease Ehlers-Danlos.
While there are several types of the disorder, the 5FM mid-mornings host has hypermobile EDS, also referred to as hEDS.
“People with hEDS may have joint hypermobility, loose and unstable joints that dislocate easily, joint pain and clicking joints, extreme tiredness, skin that bruises easily, among so many other symptoms and indicators,” she told the Saturday Star this week.
“It's an incredibly isolating disorder, like a lot of rare diseases, because it’s ‘invisible’,” she explained.
And because her journey to finding assistance and medical help in South Africa for hEDS has been “incredibly challenging”, the radio personality decided to team up with local non-profit organisation Rare Diseases South Africa in a bid to help sufferers also in desperate need of assistance.
“Not many general practitioners are experienced with the disorder, and a number of specialists in Johannesburg that I reached out to said that they weren’t taking new patients,” she explained of her own personal journey with EDS.
“What hope is there for people with rare diseases in South Africa if medical professionals aren’t willing to help, or aren’t sure how to help?” she asked.
She said that many South Africans with EDS had been forced to seek medical attention in the US, which remains at the forefront of assisting those with the disease.
“This isn’t financially viable for me, or for the vast majority of people in SA.”
The 5FM radio host added that a whopping one in 15 South Africans are affected by rare diseases, and this prompted her to work with Rare Diseases South Africa and to use her nationwide broadcasting platform to spread awareness.
“Rare Diseases South Africa does an amazing job of connecting patients with specialists who can assist in treating their specific rare disease.”
“All you need to do is pop them an email and you’ll be assigned a patient co-ordinator who will be there to guide with resources and referrals.”
She has also been impressed with the support she has received from 5FM listeners since she started spreading awareness about EDS.
“5FM’s listeners aren’t only the coolest group of listeners on the planet, but they are also incredibly kind. They are always keen to help out and are a massive youth group ready to make a positive impact wherever they can.”
She explained that during her radio show, which airs every weekday between 9am and 12pm, she has been honest about her issues, including those related to her mental or physical health.
“We’ve created a community where strangers send words of support and encouragement to others, and where people feel comfortable enough to speak about things that they are struggling with.”
She also believes it is important to use her platform to help others.
“I think anyone with a significant platform has a responsibility to draw attention to causes that are close to their heart. We’re all a community, and need to look out for each other.”
Her advice to all those suffering from a rare disease is to seek help as soon as possible.
“The best thing to do is to reach out to the good people at Rare Diseases South Africa, not just for Ehlers-Danlos, but also for any rare disease that might be affecting your quality of life.”
To get in touch with Rare Diseases South Africa, contact https://www.rarediseases.co.za/ or email: [email protected]