An Australian woman has spoken of her heartbreaking experience not being believed by doctors ahead of being diagnosed with a serious disorder.
A 19-year-old from Sydney, Australia, is now battling chronic pain and has been bedridden after being diagnosed.
Initially, when she was 17, Marissa De Santis said she began experiencing a whole host of symptoms including chronic pain and fatigue, fainting and dizziness as well as others.
However, her doctors told her it was likely just anxiety and that she was perfectly fine.
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She has now been diagnosed with Functional Neurological Disorder (FND), a complex and poorly understood condition that disrupts how the brain communicates with the body.
FND affects movement, sensation, and even organ function but the condition is not understood well in the medical community.
Speaking to news.com.au., Marissa spoke about her experience and ultimately what she wants now in regards to her health and future.
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She said: “I just want to be independent. People have no idea what it is. They look at me and think I look fine.”
Marissa also spoke of the frustrations of the condition not being well understood. She explained that she has had multiple tests that have come back saying that she is fine and while her body may appear so, internally she is suffering.
She went on to explain when she knew for a fact she wasn’t just experiencing anxiety.
“My body was shutting down, and I was overwhelmed and exhausted beyond word.
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“Then one afternoon, everything changed — my body started shaking violently. I lost control. I had a full-body seizure. My eyes locked shut. I couldn’t speak, move, or cry for help.
“That was the moment I knew — this wasn’t just anxiety. It was real.”
The teenager remarked that her 14-year-old sister has now also been diagnosed with FND and has previously collapsed, suffered seizures and lives in chronic pain, although Marissa’s is more severe.
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Holding back tears, their mother Sylvia has spoken of the frustrations of watching her daughters deal with this issue.
She said: “It’s just heartbreaking. I want them to be better. There’s no help, there’s no answers, it’s so frustrating.
“Marissa should be worrying about who she’s going to party with, not whether she can stand in the shower.
“I just research and push doctors to listen. But I can no longer work or provide. We may need to look at selling our house. It’s a constant battle."
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She had to take a step back from their family’s dog grooming business in order to be an at home full time carer for the pair of them.
The family have now set up a GoFundMe page to help fund her getting a service dog, that can help her battle the symptoms of her condition as well as offering her a new companion.
Topics: News, GoFundMe, Health, Australia, World News
Gerrard Kaonga