A rare woman with a rare cause
If you suffer from a rare disease or know of someone who does, you know the struggles related to these illnesses. But the Rare Disease South Africa organisation is here to fight for you.
Being sick sometimes can make one feel lonely, isolated and frustrated; even more so when you have a disease that nobody else knows anything about or understands. For this reason Rare Diseases South Africa has been established.
The organisation not only tries to empower those who suffer from a rare disease, they also advocate for life-saving treatments and a better quality of life.
Approximately 3 000 000 South Africans are affected by rare diseases, and on the West Rand Maryke Thomson has made it her mission to support those in the same boat as she.
In 2017 Maryke was diagnosed with a rare brain disease called idopathic intracranial hypertension (IIH) and empty sella syndrome, which means there is too much pressure on her brain. In October 2017 she had a shunt implant to help relieve the pressure. But she will have to live with the disease for the rest of her life as there is no cure.
When she found out about her condition, she joined a Facebook support group where she heard about Rare Diseases South Africa and decided to register with them. It was however only last year that she became more involved with the organisation and when they were looking for a representative on the West Rand, she applied.
“I had to ask them to repeat it twice when they told me I had been chosen as the West Rand representative. I could not believe they chose me,” she said laughing.
She explained that having a rare disease can sometimes make you feel lonely and that she wants to be there for the patients who feel they have no one to turn to, especially children.
“I have grown so much in the last few months,” she added.
There are several ways that you can show your support for those who suffer from rare diseases. Rare Disease Day is observed on the last day of February every year, and this year the organisation is celebrating it in a special way – with a denim walk by night at the Walter Sisulu Botanical Garden.
Gates will open at 4pm and the event will start at 7pm. Participants are encouraged to wear their denims and their funkiest neon gear. You can bring your headlamp or torch and take on one of two routes – the wheelchair-friendly 1,5 kilometre route or the 2,5 kilometre route.
Tickets can be bought on Quicket at R100 per adult, R65 for teens and pensioners, and R50 for children under 12. For children under two it is free.
If running and walking are not for your, why not buy a Rare Disease Day ribbon from Maryke for R10.
You can also host a fundraiser or donate to the cause. For more information, contact Maryke on 082 317 3101 or send her an email at maryke.thmsn@gmail.com. You can also visit the organisation’s Facebook page, Rare Diseases South Africa.
