‘You just keep going with your head held high!’ – sisters want to help others with rare condition

Two sisters with a rare brain condition are raising awareness of their invisible disability for which there is still no permanent cure.

Harriet, 22, and Georgia Wilson, 27, Bushey, Watford have Type I Chiari malformation (CM) – a disorder where the lowest part of the back of the brain pushes down into the spinal canal, putting pressure on the brainstem and spinal cord, and obstructing the flow of fluid which causes unpleasant neurological symptoms.

The younger of the sisters, childminder Harriet, was diagnosed in 2010 at just 13 years old after suffering persistent headaches and muscle weakness which were initially misdiagnosed as lactose intolerance, whiplash and hormonal imbalance before receiving lifesaving brain surgery at Great Ormond Street Hospital.

Harriet said: “It was far more difficult for me before Georgia developed symptoms as I felt so alone and as much as I wish she didn’t have to suffer, it is unbelievably comforting to have someone who understands.

“It has really helped me realise how precious life is and how quickly it can change.”

HR and office manager Georgia discovered she was a carrier of CM and syringomyelia (cysts in the spinal chord) at 23 after being taken to The National Hospital for Neurology and Neurosurgery (NHNN), Queen Square, with a suspected stroke.

Georgia said: “The hardest part of living with this condition is coming to terms with saying goodbye to my old life and learning to adapt to my new, very unpredictable one.

“I go through ‘good day’ spells where I can feel relatively normal and the rest of the time I wake up with the room spinning, severe nausea, headaches, pins and needles in the fingers and very weak, heavy feeling limbs.”

Harriet and Georgia have had to face multiple brain surgeries just to improve unpleasant symptoms such as dizziness, migraines and body numbness yet the problems still remain.

Their mother and registered carer Joanne Butcher, 55, said: “When Hattie was diagnosed at 13 we had no idea what it was, the brain surgeons only knew how to operate to make things better but they had no idea on how to live with the condition on a day-to-day basis.

“When Georgia was diagnosed several years later my world fell apart again and on so many occasions I just wanted to crumble but you always have to show strength to your children.”

The sisters continue to struggle to lead normal lives as they are restricted from doing day-to-day tasks such as driving in case of sudden seizures or fits which Georgia experienced in March when she collapsed at Bushey Station.

“As a parent it’s heartbreaking to see your children suffer and knowing that there is no cure is very hard,” Joanna added.

“I always say to my girls, you have Chiari, it doesn’t have you and we will fight this and stay strong together as a family unit.”

The family said that they have felt very isolated as there wasn’t a lot of help or support for them and they want to help others that suffer like they all have.

Harriet and Georgia are raising awareness of the condition by creating an online support network where everyone from patients to parents and friends can visit to find honest experiences, opinions and advice.

Georgia added: “We hope that eventually those diagnosed with Chiari will not have to feel as helpless and scared as my sister did all those years ago.

“One thing it has taught both of us is that we really do only have one life and whatever it throws at you, you must get up and just keep on going with your head held high!”

You can follow the Wilson sisters’ journey on Instagram @invisibleusuk

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