Family and friends rally to help expat with rare disease

The family and friends of a South African woman hospitalized with a rare neurological disease are raising funds to help pay for her treatment.

Yvette Pienaar was enjoying life in Gumi, North Gyeongsang Province, with her long-term boyfriend when she was suddenly hospitalized after being diagnosed with a rare auto-immune disease.

The 26-year-old was initially placed in a hospital in Daegu on July 8, after experiencing a brief reactive psychosis. 

Doctors believed she was suffering from a psychotic breakdown. It was only after the medication failed to work that they realized she had been misdiagnosed.

Further testing showed that the sickness was not a mental one, but a disease called Anti-NMDA receptor encephalitis.

Anti-NMDA receptor encephalitis is a rare disease first identified in 2007 that mostly affects young women. Symptoms include seizures, paranoia, being dazed and personality changes. These can often match those of other illnesses, and as a result, misdiagnosis is common.

After spending more than two weeks in multiple hospitals in an induced coma, Pienaar was transferred to Seoul National University Hospital, where she is currently undergoing treatment.

“Her boyfriend of 10 years, James Van Den Heever, has not left her side the entire time, even sleeping on hospital floors at times,” said Audrina De Moss, a close friend and coworker of Pienaar.

Pienaar’s mother and father also flew in from South Africa, along with Van Den Heever’s parents.

Pienaar’s treatment in Seoul makes travelling difficult for her friends in Gumi, but De Moss said friends were still visiting to show support to Pienaar and her family.

The medical bills grow rapidly as medical insurance only covers part of the cost.

The MRIs, cat scans and EEGs that Yvette goes through daily are not covered, costing up to 750, 000 won per scan and 200,000 won for treatment per day.

With Van Den Heever taking time off to work, the two are in a position of no income with doctors predicting that Pienaar will have to remain hospitalized due to the disease’s long recovery time.

Pienaar’s friends have started “Funds for Yvette,” a Facebook page dedicated to raising funds to help pay off the debt and creating awareness about her condition.

“We are unsure on the current total, but we are beyond amazed and grateful for people around the world showing kindness and generosity during this time,” said De Moss.

Support for Pienaar also continues to grow from the wider expat community, as a charity auction group has decided to lend a hand.

Steven Loach and Heino Botes, founders of Korea MacPC Guys Auctions, are helping Pienaar’s cause by auctioning off repaired computers and electrical goods.

“We only started the auction for Yvette last Friday ― it’s been a few days and we’ve got roughly 500,000 won so far. It’s only a start,” said Steven, 32, who is working as an English teacher.

“I did it in the hope that it would bring other people forward to really care and understand how serious the situation is. The focus is not just on the money ― the medical bills can be huge, but her problem is really serious and she needs emotional support too. Not just her but also her immediate friends and family, because Korea is so isolating.”

Since the auction hit the ground, more companies are coming to Loach to offer their own services on auction for Pienaar.

“A company which imports foreign drinks into Korea offered four cases of Hunters Extra Dry Cider to auction totally free. He would pay the postage fee and everything, so that’s an example of getting other people to care and coming together about it,” said Loach.

“That’s also bringing forward other companies too, like a cake company and a foreign restaurant donating a pizza.”

Pienaar’s family and friends hope that these fundraising efforts will also create awareness about her condition.

“It’s horrifying to think how many people may just be stuck in a psych ward when they are really battling a neurological sickness. Awareness is vital to proper diagnosis,” said De Moss.

Donations are being accepted through bank transfer in Korea to KEB account number 62020-36-23013 (holder Van Den Heever James Gerhaus), in South Africa via Nedbank account number 10155-66227 (holder A.C. Pienaar) and by credit card or Paypal through www.waegooktravel.com/pay.htm. Donators are asked to use Yvette as a reference. A donation box can also be found in Corona bar in downtown Gumi.

By Astha Rajvanshi  (astha_raj06@gmail.com)