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

[SNT Gatchaman]

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.

“She was originally given the diagnosis of a pain syndrome, and we were told to basically forget about the blood.”

Over the years, vomiting, tachycardic episodes and severe pain all became constant. Abdominal vascular compressions and Dieulafoy lesions were also eventually discovered.

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.”

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.

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.