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Mystery Condition, Doctors Don’t Even Have A Name For It

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Experts say her condition is so rare, they’re unable to identify or give it a name.

Though Katie was diagnosed with megalencephaly at birth, a growth development disorder which causes overgrowth of the brain, doctors dont understand other symptoms she is having.

Her mum Angie says she has been waiting for a full diagnosis ever since Katie was born.

Angie, who lives in Florida, US, with her family said: “Katie is very rare – she has not been diagnosed with anything and they’re still trying to find out what she has.
“We found out when I was about six months pregnant with her that she was going to have megalencephaly.
“But I do not know why her face is the way it is.”

When Katie was first born, the family travelled to Hollywood, Florida, to visit specialist doctor Roman Yusupov.

But unfortunately, he was unable to diagnose Katie and has continued to monitor her progress since then.

Katie suffers with side effects including seizures
He said: “I have never seen anything like it, she is truly unique and perhaps one in a million.

“Her diagnosis is very interesting. I think she has what is known as an overgrowth syndrome in which different body parts start to increase in size.”

Due to Katie’s enigmatic condition, she has endured numerous surgeries throughout her life including brain surgery at just nine months old.

Angie added: “Since birth, Katie has had brain surgery, her tonsils removed, her feeding tube, they downsized her ear, her tongue, her cheeks have been downsized several times and she’s had two cysts removed off of her head.”

Katie attends a school for children with disabilities – but she is unable to work with computers.
She comes from a large family with seven biological brothers and sisters plus step siblings – so she is never short of care at home.
Katie’s sister, Megan Renfroe, 18, said: “I think the best thing about Katie is her personality – she’s very outgoing and wild. She has an amazing laugh!”
Doctors are currently discussing a name for the condition – which remains undiagnosed – and her future prognosis is unknown.

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