Heidi

With rare conditions you often have uncertainty.  By their very nature there are not many people who have the condition and therefore it is not always possible to know how it will affect you or progress.  One person who lives with this uncertainty is Heidi.  She has Ehlers Danlos syndrome type 3.

Heidi enjoys going to the cinema and eating out.  She loves putting make up on, having her nails painted and dressing up as Disney princesses,  Heidi absolutely adores animals and going on family days out.  She also enjoys swimming & horse riding which she attends through the RDA.  Despite her condition she loves going to cheerleading with her friends.

Ehlers Danlos syndrome type 3 is a collagen disorder that makes her joints to partial sublux (dislocate) and to fully dislocate.  She also has low muscle tone which causes her to be very unsteady on her feet, it also causes tiredness & severe chronic pain around the joints.  The condition also causes gastrointestinal problems. 

She receives hydrotherapy and physio in school and is dependent on her wheelchair, at times, as her joints ache.  Heidi is under the care of Clinical Genetics in Wrexham and also the Orthopaediatric team in Alder Hey Liverpool.

She has had countless operations from the age of 8 months old with the most recent being 6 hours of reconstructive surgery & with more planned in the next few years.  Heidi also has developmental dysplasia of the hip which she has shallow hip sockets & could be facing more surgery on her right hip in the very near future.  It is a degenerative disorder with no cure and because it is so rare there is no knowing how the condition will progress.

In addition to Ehlers Danlos Syndrome Heidi also has an autistic spectrum disorder.

To learn more about this condition click here.

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If you would like to know more about The Rare Project email ceri@ceridwenbarkley.co.uk if you would like to take part.