Stratford upon Avon

Hi, I’m Beckey, and I am the area co-ordinator for South Warwickshire (based in Stratford- upon-Avon). I have had a ‘shopping list’ of health problems all my life, including heart surgery at age 3, and full spinal surgery at age 11 for a severe kyphoscoliosis. I have been to every consultant I can think of for all sorts of issues, and eventually I was diagnosed with Fibromyalgia in 2013.

About 3 years into my diagnosis, I knew there was still a piece of the picture missing and eventually discovered that EDS fit me perfectly. I have had this confirmed by a few different specialists. My GP has been really supportive, and I am currently waiting for a referral for genetics testing to investigate whether it is Kyphoscoliotic EDS. I am happily married to my best friend, Paul and we have two wonderful teenagers. Our 17 year old daughter has had very similar health struggles as me and has recently received her diagnosis of hEDS.

My professional background is in Youth and Community work. Although I am no longer able to manage paid employment, I actively contribute to my local community through various volunteer activities. I can often be found whizzing about town in my Robooter (electric wheelchair). I have been running a Fibromyalgia support group for over 7 years and am pleased to be able to facilitate a space where fellow Zebras can come together for mutual support.