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HomeHealthDoctors said our son had paranoid schizophrenia... it was actually a rare...

Doctors said our son had paranoid schizophrenia… it was actually a rare life-limiting disease

A Embed For years, the man mistaken his condition for delusional schizophrenia until he was finally diagnosed with a very rare life-threatening illness.

Robert Turner was born with juvenile Batten disease, a condition that causes mental illness, worsening seizures, and progressive loss of vision and motor skills. The disease is fatal and gradually worsens over weeks, months, or years.

His parents, Pam and Gary, say that neurodegenerative disease did not begin to show signs until Robert was seven years old. He first lost sight before he began to have his seizures when he was a teenager.

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By the time Robert was 18 years old, when he was registered as blind, his legs began to bend at his knees. Walking became difficult and physiotherapy training could not help him stand upright.

It was only a few years later that his family finally received the news they had been waiting for. When Robert was diagnosed with 24-year-old juvenile Batten disease, he was staying in a mental health facility suspected of having delusional schizophrenia.



Pam and Gary Turner

“He shouldn’t have been in a mental health facility,” Pam said. Manchester Evening News. “In our internal organs, we knew it wasn’t right, but we weren’t trained. They wanted to diagnose delusional schizophrenia, but they knew it wasn’t. The consultant said he was wrong.

“He had two tests. It would be between the two diagnoses. Neither was great, but Batten’s was the worst. To be fair, we were by that time. I knew in my heart what would happen.

“We took him out of the mental health facility and took him to a ward with a caregiver, then we searched for a house for him, and that was when we heard about the SeeAbility family. is.”

Juvenile Batten disease begins between the ages of 5 and 8. Typical early signs are progressive anopsia, seizures, ataxia or clumsiness. This form is slow-growing and dies in the late teens or early twenties, but some live up to their thirties.

Eventually, usually during the late teens or twenties, additional symptoms such as sudden involuntary muscle contractions, muscle spasms resulting in slow and stiff movements of the legs, weakness or paralysis of all limbs, sleep disorders, etc. An error will occur.

In most cases, progressive neurological and psychological degeneration is a life-threatening complication that leaves the affected individual bedridden, unable to communicate easily, and ultimately by the 20s or 30s. Causes.

Robert lived in Hampshire expert Heatherhouse until his death in 2019 at the age of 33. The doctor told his family that if he lived past the age of 30, it would be a miracle.



Robert as a kid

The family believes that Robert’s ability to live much longer than expected was due to the care of Heatherhouse experts. They say: “In September 2019, we spent 10 days of brilliant sun with a boy at his SeeAbility house. We laugh, love, and finally peacefully say goodbye to our lovely Robert. I told you. Thanks to SeeAbility, we can spend more time with our sons than we ever dreamed of, and we can’t thank them enough. “

Operated by the charity SeeAbility, Heather House is the UK’s only professional home care facility that supports young people with juvenile Batten disease. With gratitude, families are now raising funds for charities to help people with learning disabilities, autism, and rare diseases.

The Living Beyond Expectations appeal will run from June 24th to July 27th. www.seeability.org/LBE-Appeal ..

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