Single Mom Dealing with Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome makes it difficult for Kristina to accomplish daily living tasks.  But, she has been refused disability benefits in Australia on the basis that her condition is ‘curable’. She has trouble driving to her doctor appointments without pain and dislocation. She wants to spread awareness by sharing how EDS affects her daily life.

By: Margaret Burin  (ABC Local).

kristina

Central Victorian woman Kristina Greenwood suffers from Ehlers-Danlos syndrome, a rare genetic condition that causes daily bone dislocations. (ABC : Margaret Burin )

“For many people the most painful part of a long commute is boredom. But for country Victorian woman Kristina Greenwood, a drive to receive specialist treatment for her rare condition in Melbourne can cause painful bone dislocations.”

“Quite often I end up having to stop what I’m doing to pop fingers or elbows or knees back into place,” Ms Greenwood said.

“It happens daily, because just moving a chair, getting a cup of tea, brushing my teeth, simple things become very painful and difficult to achieve.”

Ms Greenwood, a single mum in Central Victoria, was last year diagnosed with Ehlers-Danlos syndrome.

“The uncommon disorder affects connective tissue production, in varying levels, for people who carry the gene.

Both of her arms are covered in bruises, another symptom of the condition.

“I was only diagnosed last year,” she said.

Her 10-year-old son Pieter also has been diagnosed with Ehlers-Danlos, making sport and usual childhood activities a severe risk.

“I don’t want him to end up as unwell as I am,” she said.

“With treatment there is hope.”

Up until Ms Greenwood was in her late 20s, she regularly went horse riding, indoor rock-climbing and bush walking.

Now in her early 40s, the condition has become debilitating.

Having lived in the Yarra Valley for many years, she moved to Maryborough in central Victoria two years ago because it was her only option for transitional housing.

But given that Ms Greenwood and her son have a rare condition, it means regularly driving to Melbourne to receive specialist treatment.

“Having to hold a steering wheel for more than an hour means that my shoulders dislocate, my elbows, fingers, wrists, dislocate,” she said.

“In the heat that affects my heart conditions and it puts me at high risk of a heart attack or sudden cardiac arrest.”

This single mom is struggling with maintaining her independence and providing support for her son who also has been disgnosed with Ehlers-Danlos Syndrome.

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