Member Stories

Everyone has a story to tell

Name: Chris Cook

Condition(s): Riley Day Syndrome, T2 diabetes, Blindness

Wears: Sports Band (Green),  Expandable Bracelet

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"My name is Chris, I’m 43 and totally blind. I’m a life-long railway enthusiast who's lucky enough to be able to mix pleasure with work, as I work as an accessibility and disability awareness consultant for various transport operators. "

Funnily enough, the most visible of my disabilities i.e. my total blindness is actually the one which is least critical in the grand scheme of things.

I became a MedicAlert member in the early 80s, when I was only 8. My parents had heard about MedicAlert from a leading eye surgeon who also diagnosed me with Riley Day Syndrome (Familial Dysautonomia).

This is a very rare condition, which affects my ability to regulate or accurately feel temperature. I also produce excess amounts of scar tissue if I sustain injuries and my pain threshold is severely diminished.

In other words, I have to take extreme care when bathing, eating or dressing etc. making sure I don’t accidentally burn myself or wear inappropriate clothing for the current temperature. In the past ten years or so, I’ve also been diagnosed with type 2 diabetes as well just to add to the mix.

I would definitely recommend MedicAlert to anyone without hesitation, who has a condition that’s not immediately obvious to staff treating you.

My membership gives me complete peace of mind. I'm often on the move in the UK and Europe and I know that if I were to have an accident or become unconscious for whatever reason, I would be identified easily and medical staff could then access relevant information about my conditions, ensuring that I received prompt and appropriate treatment.

I always try to advocate MedicAlert in my training courses, through making railway staff aware of medical ID jewellery and explaining its meaning. This way, if they have a passenger wearing MedicAlert jewellery and they are taken ill, the staff can act accordingly without any further delay.

When I was younger, I wore a MedicAlert necklace and subsequently a bracelet, but I wasn’t able to take these on and off myself. That was of course the theory behind my parent’s thinking, that I wouldn’t be able to take off the jewellery and probably lose it whilst at school and so they stayed on virtually the whole time.

As I grew older, but not necessarily wiser and studied at university, I decided to stop wearing MedicAlert jewellery altogether, as I wanted to be freed from the hassle of fiddly clasps. I also couldn’t envisage a time, where I wouldn’t be able to tell medical staff about my conditions and so whilst I remained a MedicAlert member, the jewellery was consigned to history for around 20 years.

Following a minor accident in January 2011, where I collided with a metal pillar lacerating my forehead, I was taken to hospital to be stitched up. In the ambulance, the paramedic asked me why I wasn’t wearing my ID jewellery, when I was a MedicAlert member. I explained to him about my childhood experiences with the jewellery and that I was glad to be free of it. He accepted this, but told me that the range was significantly greater now and that it may be worthwhile having another look to find a suitable piece for my own safety and peace of mind.

When I got back home, I took his advice and purchased a large, expandable bracelet, which I can slip on and off really easily. In the past few weeks, I’ve also bought a green sports band as a spare.

MedicAlert and railways both play vital roles in my life. I’m now in the habit of putting my watch on my left wrist and slipping my MedicAlert jewellery onto my right wrist before I leave home each morning and head for the railway station. They are together a perfect partnership, as aptly shown by my photo.

Indomitable is defined in the Collins English Dictionary as: “(of courage, pride, etc.) difficult or impossible to defeat or subdue” and you can’t say it better than that in my opinion.

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