NZ Herald - Ehlers-Danlos Syndrome: Germany treatment for Hastings teen

SNT Gatchaman · Jun 17, 2023

Ehlers-Danlos Syndrome: Germany treatment for Hastings teen - ‘If we don’t go, I one hundred per cent believe Jaimee will die’

The Hastings girl grew up a star performer and athlete. She was a champion artistic roller-skater and her mother Jo Gregory said she longs for the day she can get back to doing what she loves.
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“She was originally given the diagnosis of a pain syndrome, and we were told to basically forget about the blood.”
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Over the years, vomiting, tachycardic episodes and severe pain all became constant. Abdominal vascular compressions and Dieulafoy lesions were also eventually discovered.
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She said Jaimee was often written off as difficult or labelled with psychological and hypersensitivity issues.

“It’s so just easy to put everything down to a psychological issue.”
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Jaimee was eventually diagnosed with the disease and was found to have the type that had positive genetics and an abnormal gene associated with small vessel bleeds.
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The surgery, tests and treatment in Germany will look to help release the abdominal vascular compressions, which would hopefully allow Jaimee to regain the proper ability to eat and drink.
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NZ Herald - Ehlers-Danlos Syndrome: Germany treatment for Hastings teen

SNT Gatchaman Senior Member (Voting Rights)

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NZ Herald - Ehlers-Danlos Syndrome: Germany treatment for Hastings teen

SNT Gatchaman Senior Member (Voting Rights)

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