The daily challenges of arthrochalasia EDS 

Posted July 15, 2019

My name is Sue, and I live in Melbourne, Australia and I have arthrochalasia EDS (aEDS)/Osteogenesis Imperfecta.

My diagnosis was confirmed by genetic testing in the USA, and diagnosed by The Austin Hospital Genetics Department here in Melbourne. I also have a very rare anyuresum, growing since birth called a Dehiscence High Ridding Jugular Bulb.

I had my first dislocation at aged 6, in my ankle, and I have continued to have these dislocations ever since. I had also broken some small bones in my foot at around the same age. My hips have always been my biggest joint problem, with them both slipping in and out of their joints daily, causing a large amount of pain.

I have a permanent SPC Catheter inserted due to a acontractile bladder, after I suffered a spinal injury from just moving slightly to the right while lying down in bed, and snapped my coccyx. I have a swallowing disease of the esophagus called Achalsia, and broken bones from no injuries at all. These are just some of the daily challenges of having arthrochalasia EDS.

I am 44 years old and I am married to my husband Jack; we also have a poddle named Bailey! I am an interior designer, although sadly I had to stop working 4 years ago, due to illness.

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