‘Lupus changed my whole life,’ says Mayville mother
Due to her diagnosis, Marilyn Thiessen's daughter was delivered prematurely by caesarean at seven months.
As the Lupus community commemorates Lupus Awareness Month in May, the Berea Mail’s Danica Hansen sits down to chat with local lupus survivors to find out more about the little known disease. Lupus is an autoimmune disease which can lead to inflammation affecting many different body systems — including joints, skin, kidneys, blood cells, brain, heart and lungs. This week we chat to Mayville resident, Marilyn Thiessen.
THE Mayville mother was diagnosed in 2014 when she was pregnant with her daughter.
“Since then I have been through a lot. I started to have seizures and was put on epileptic medication which caused a scar on my brain. This affects my memory and cognitive function,” she said.
She continues to suffer from seizures now.
“It’s scary. Now I get seizures because I have inflammation of the brain. It’s scary because I can’t be left alone. There has to be someone here at all times. I can’t go out alone because I could get a seizure. Emotionally, it’s draining. It’s changed my whole life. I don’t drive anymore,” she said.
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Due to her diagnosis, Thiessen’s daughter was delivered prematurely by caesarean at seven months.
“She spent a month in the neonatal ICU. I couldn’t breast feed her, so she had be fed through her nose, but she is perfect, she is healthy. It didn’t affect her,” said Thiessen.
“When you are pregnant, your hands and feet swell, but I was swelling up everywhere, even in my fingers. Then my gynaecologist noticed that my daughter wasn’t growing at the rate she should have been growing. He sent me to a rheumitologist who did a blood test- it’s a specific test for Lupus called an Anti-Nuclear Factor (ANF) test. That came back positive,” she said.
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Thiessen explained that there are several types of Lupus.
“I have systematic lupus erythematosus (SLE). The immune system is confused. The immune system is supposed to protect the body, but because it’s confused, it creates antibodies which attack your body – your organs, cells and especially your kidneys. Because Lupus affects the whole body, it is very difficult to diagnose. It can take years,” she said.
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