Bridgetown resident Gafsa Garsan Bux was diagnosed with Ehlers Danlos syndrome (EDS) last year.
Bridgetown resident Gafsa Garsan Bux was diagnosed with Ehlers Danlos syndrome (EDS) last year.

Athlone woman with debilitating rare disease nominated for award

By Shakirah Thebus Time of article published Dec 16, 2020

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Cape Town - In spite of suffering from a debilitating rare disease, an Athlone woman is determined to be a sign of hope and inspiration.

Gafsa Garson Bux, 46, a former operational manager at Groote Schuur Hospital with about 20 years’ experience in nursing, was diagnosed with Ehlers Danlos syndrome (EDS) last year.

EDS weakens the connective tissue in the individual’s body, subsequently affecting the skin, joints and blood vessels. Bux takes a plethora of medication daily and suffers from chronic body pain. One of the more prominent features of EDS is the over-flexibility of joints, allowing them to dislocate and bruise the skin easily.

“I became disabled within a year, my hands are in splints. I use my crutch and wheelchair.”

She said she was unable to secure a disability grant this year due to the Covid-19 pandemic, and was struggling to afford her medication. Her 70-year-old father cares for her and her daughter at their Bridgetown home.

“I want people to be aware how certain rare diseases affect people. It's been quite a journey. In the beginning, I started having backache and the doctors couldn't understand why I was in so much pain. I went for several procedures on my back to relieve the pain, but it didn't help. Then it started with my hand. I didn't have a grip.”

Several tests from various healthcare practitioners were done and Bux was later diagnosed with EDS.

She started writing poetry using her thumb after experiencing depression due to her medical condition. Bux said she intended to publish this work.

“This condition makes you quite forgetful at times and has a lot of side effects, but the worst is the pain.”

Friend Elaine Govender, 59, from Milnerton said through Bux’s Whatsapp support group, she lifted people’s spirits.

“She struggles to use her hand because it is swollen, but that doesn’t deter her from writing.”

Bux has been nominated as one of the Influential Women of the Year 2020, hosted by Big M Productions.

The gala event is set to take place this coming Saturday at Gold Reef City. Bux said she was unable to afford the flights to attend the ceremony.

Director of the initiative, Pinky Mothie, said for over 52 years, herself and Big M Productions have been involved in women empowerment.

To assist, contact Bux on 074 960 5381.

Cape Argus

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