'It's not in my head': Hope for sufferer of rare joint disorder
- Kelly Smith
- Oct 12, 2016
- 2 min read
Gendi Roberts was just eight years old when she received the life-changing news that she had Ehlers Danlos Syndrome.
Twelve years later the Christchurch girl is in desperate need of the specialist care in Baltimore that will help treat her severe spinal instability.
Ehlers Danlos Syndrome (EDS) is a rare disorder that causes hyper joint mobility.
When she was first diagnosed Roberts and her family did not know about EDS.
For Roberts, living with EDS meant her ankles, shoulders, knees and elbows would all frequently dislocate.
"I can't say how many times I have had dislocations, hundreds," she said.
Growing up Roberts kept her condition close to her chest.
"I wanted to get on with things as best I could."
Her parents gave her free rein and wanted her to be able to try anything, she said.
Roberts would go out and play rugby, and if something dislocated she'd put it back in and keep going.
"I learned to listen to my body and not be so hard on myself."
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She began to experience shaking episodes, headaches and loss of hearing and vision.
Doctors did not believe she was experiencing complications and suggested her symptoms were stress-related.
"It was heartbreaking. Over the past five years I have been told it is all in my head."
Roberts has recently been diagnosed with craniocervical instability, cervicomedullary syndrome and atlanto-axial rotary instability by an American specialist who reviewed her brain scans.
She sometimes has to use a wheelchair and still experiences chronic pain and fatigue.
It is likely Roberts will receive a spinal fusion in Baltimore in order to try and prevent paralysis.
During her trip she will also go to a children's heart hospital in Virginia for diagnostic testing in an effort to find out why she has problems regulating her blood pressure, heart rate and circulation.
Roberts needs to raise $30,000 to cover medical costs.
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