Merle O’Brien, one of South Africa’s most innovative and creative minds, once danced professionally. These days, she struggles to talk and hold a laptop.
Merle, 46, has been diagnosed with a rare and life-threatening autoimmune disease. Systemic sclerosis affects the connective tissue and causes the thickening of the skin and various body parts to malfunction. The skin can also become hard, tight or red in colour. The diseases affects 1 in 100 000 people, but women over 40 seem to be more prone to it.
Merle started experiencing symptoms in late 2014. “I had a dance production at the Artscape in 2014, but I started losing my breath and feeling tired. I actually had to cancel my show. By November, I had an irritation in my throat, and the doctors kept on giving me antibiotics,” she said.
At the beginning of 2015, Merle was lecturing at Vega the School of Brand Leadership and found it was becoming increasingly difficult to speak. She started experiencing reflux. Doctors suspected she had an ulcer or hernia. “I started noticing that my hands would turn ice white and then blue,” says Merle.
Merle grew up in Rylands but now lives in Mouille Point. She’s an award-winning crisis and brand strategist, social innovation activist, a curator in 2014 when Cape Town was the World Design Capital and creativity and business innovation facilitator and lecturer at Vega. She has a BA in Drama and Industrial Sociology from UCT, a Masters in Future Studies from Stellenbosch University, was chief operating officer of the UN Earth Summit in 2002 and is a former president of the Public Relations Institute of South Africa (PRISA). She has also studied Indian classical dance.
Merle was selected to attend the African Innovation Summit in Botswana hosted by Michigan Institute of Technology (MIT) in August last year. When she returned, the disease seemed to progress rapidly. “I couldn’t breathe, I couldn’t get my words out, I couldn’t swallow.”
She was admitted to the ICU at Somerset Hospital and kept there for three weeks. As doctors tried to figure out what was wrong with her, she recalls them telling her the one disease she didn’t want was systemic sclerosis. “They all said, of all of them, the one you want to pray you don’t have is systemic sclerosis.”
Merle hopes a stem-cell transplant will eradicate the disease completely. Money is being raised to fund the procedure, which costs R600 000. Merle doesn’t belong to any medical aid scheme.
“If it works, it’s a permanent solution… there’s no cure. This is the closest we’re going to get to a cure,” says Dr Bridget Hodkinson, a rheumatologist at Groote Schuur Hospital. She’s a specialist in the field of joints and connective tissue.
She says Merle would be one of the first people in South Africa with sclerosis to undergo a stem-call transplant.
While in hospital, Merle attended a support group, where she met Milli Kubach, 48, who also suffers from systemic sclerosis. Milli, who lives in Tamboerskloof, organised a walk from Mouille Point toward the Waterfont on Saturday April 2, Merle’s 46th birthday, to raise funds for the transplant. Milli, who has respiratory sclerosis, was diagnosed in June 2014. More than 60 people attended the walk, and over R8 000 was raised. ”It was very moving, very touching. There wasn’t a dry eye,” says Milli.
Sclerosis affects everyone differently. “In my case,” says Merle, “they’ve got me on the maximum of all the medication, but it’s still progressing.”
It has already affected Merle’s oesophagus, jaw and the back of her head. “Wherever it goes, it causes fibrosis… The big thing at the moment is that it has my epiglottis.”
Merle has lost her ability to swallow: anything she eats or drinks goes down because of gravity.
”Now I’m not able to work, my speech is limited, I have a full-time nurse aid because I can’t cut things. I can’t even hold my laptop because it affects my hands and gripping ability. Considering I used to be a professional dancer, it’s a significant change.”
She hopes that if her transplant works it will have positive spin-offs for the way the disease is managed in South Africa. “If I break the ground from here, I can break the ground for Milli, I can break the ground for others.”
* There will be an art auction at the Artscape on Thursday April 21, at 6pm, to raise funds for Merle’s transplant. To donate visit https://www.generosity.com/ medical-fundraising/help-me-give-systemic-sclerosis-the-hardest-kick or call Milli at 082 473 4650.