Gaucher Disease

Rare Genes Leap Into Awareness

Elaine Benton | Posted 24.02.2017 | UK Lifestyle
Elaine Benton

How do you get the general public's attention rousing interest in a rare chronic disease? As a patient advocate and ambassador for Gaucher disease, I have written about every aspect imaginable of living with a rare disease.

We Give Them Wings So They May Fly!

Elaine Benton | Posted 02.12.2016 | UK Lifestyle
Elaine Benton

I had four older brothers and as the only girl in the family, my mother and I had a close relationship. I left home when I was 21 and not once did my mother voice any concerns or worries, but whole heartedly showed her support, realising it was time for me to find my own way.

Times are Changing

Elaine Benton | Posted 04.11.2016 | UK Lifestyle
Elaine Benton

If you live with a rare disease like myself, no doubt often out of necessity, you have become your own advocate. I can't recall how many times I've had to explain to medical staff about Gaucher disease, the rare disorder I was born with.

Night Time Antics

Elaine Benton | Posted 28.10.2016 | UK Lifestyle
Elaine Benton

I am always scouring the internet, reading articles and keeping abreast of new developments that may help improve my quality of life, living with Parkinson's. Just like other patients, I have learnt an awful lot in the eight years since diagnosis.

October - Gaucher Disease Awareness Month

Elaine Benton | Posted 30.09.2016 | UK Lifestyle
Elaine Benton

Early diagnosis and treatment can help those living with Gaucher disease lead a better quality of life. Children should not have to endure what I went through as a child. Those memories stay firmly in my mind, and perhaps for good reason, as this gives me incentive to strive for better understanding of Gaucher disease.

So You Think I'm Lucky?

Elaine Benton | Posted 24.09.2016 | UK Lifestyle
Elaine Benton

Knowing how important physical exercise is to keep Parkinson's at bay, I have taken to swimming on a regular basis, in the hope this will help retain my mobility for as long as possible. The other morning as I entered the Sports Center, I was practically accosted by a woman who appeared out of nowhere.

Cycling for Gaucher Disease

Elaine Benton | Posted 09.09.2016 | UK Lifestyle
Elaine Benton

So onward and upward, I find myself interested in those who run marathons, take part in triathlons, cycle or participate in other sporting events. I cannot participate, so have to be satisfied with being a spectator and writing about those who inspire me!

It's Elementary!

Elaine Benton | Posted 02.09.2016 | UK Lifestyle
Elaine Benton

I grant you that Gaucher disease is more widely known of today than when I was young, but by patient's telling their stories, it brings attention to rare diseases, and gives them an identity creating greater public awareness.

Leaving My Mark

Elaine Benton | Posted 26.08.2016 | UK Lifestyle
Elaine Benton

Making a good first impression and leaving your mark is important, but sometimes circumstances dictate an outcome different from what you had hoped for. A particular incident that happened to me a number of years ago comes to mind. I don't think I left the desired impression, but I'll let you be the judge of that...

First Things First!

Elaine Benton | Posted 12.08.2016 | UK Lifestyle
Elaine Benton

There are certain wonderful memories that stick firmly in my mind and one particular occasion always makes me smile. Some years ago, my parents-in-law were staying with us during a particularly wet winter.

You're Never Fully Dressed Without a Smile

Elaine Benton | Posted 08.07.2016 | UK Lifestyle
Elaine Benton

Although I'm highly organised and like being prepared for any eventuality, I must confess of late, living with Gaucher and Parkinson's, not to mention the new four legged addition to our family, it's a job staying on top of things.

Travelling With Gaucher and Parkinson's

Elaine Benton | Posted 24.06.2016 | UK Lifestyle
Elaine Benton

My husband has become highly adept in pushing me in my wheelchair whilst manoeuvring a large case on wheels at the same time - impressively even up and down steep inclines. This requires not only strength but the ability to steer avoiding any oncoming passengers and obstacles.

Life Is Looking Rosie!

Elaine Benton | Posted 10.06.2016 | UK Lifestyle
Elaine Benton

We have our work cut out for us working together with a professional trainer, and the next few months are not going to be easy, but in the long term we will end up with a well-trained companion/assistance dog who will hopefully enrich our lives, give me better quality of life and help me get through each day.

Who Turned Up the Heat?

Elaine Benton | Posted 03.06.2016 | UK Lifestyle
Elaine Benton

Who would have thought it possible to turn into a human volcano? I seem to defy the laws of nature; Mount Vesuvius eat your heart out! I have become a human heater, and whilst my poor husband who is nightly tormented by my malfunctioning internal thermostat, he kindly never complains.

Who Becomes a Caregiver?

Elaine Benton | Posted 27.05.2016 | UK Lifestyle
Elaine Benton

My mother was diagnosed with vascular dementia and I was suddenly cast into the role of caregiver. The deterioration was far more advanced than I had first imagined and I witnessed this cruel disease as it left destruction in its wake.

Caring for the Carer

Elaine Benton | Posted 20.05.2016 | UK Lifestyle
Elaine Benton

As tough as it is for a patient to receive and come to terms with a new diagnosis, it is equally traumatic on the spouse/partner, who without any prior warning or consultation, is unceremoniously thrown into the role of caregiver. Many pick up this mantle without hesitation, out of loyalty, devotion and love, take on this arduous task.

Bottoms Up!

Elaine Benton | Posted 13.05.2016 | UK Lifestyle
Elaine Benton

I confess, at a loss what to do, throwing caution to the wind, I took a shot of vodka, which as you've probably guessed, did not get rid of the Parkinson symptoms. It did however relax me to a degree thereby making the situation a little more bearable with no adverse effect.

I See You!

Elaine Benton | Posted 06.05.2016 | UK Lifestyle
Elaine Benton

The things people do when they assume no one is watching can be heart-warming, amusing, but occasionally just down right astonishing. I've often wondered what makes some men feel they can't be seen in the car.

A Friend Till the End

Elaine Benton | Posted 29.06.2015 | UK Lifestyle
Elaine Benton

Having a much-loved pet put down, is one of life's unpleasant responsibilities when owning a dog. Saving an animal from unnecessary suffering, when nothing else can be done, we sometimes have to make the difficult decision, knowing it is the kind and humane thing to do.

Was It Something I Said?

Elaine Benton | Posted 27.05.2015 | UK Lifestyle
Elaine Benton

When first diagnosed, there is a flurry of shock and interest from those you know, but slowly as they realise this is a long term disease requiring dedication, their sympathy wanes. Friends, and bizarrely, some family too, have mysteriously vanished into thin air.

Presenting Gaucher and Parkinson's

Elaine Benton | Posted 11.05.2015 | UK Lifestyle
Elaine Benton

The DNA lottery has dealt me the booby prize of receiving two diseases, but ill health doesn't stop me living life to the best of my ability. "The show must go on", as they would say in the theatre.

Women Are Definitely From Venus

Elaine Benton | Posted 04.05.2015 | UK Lifestyle
Elaine Benton

Women are used to bearing it all, talking candidly and honestly on every topic you could possibly think of. In a safe environment, we are willing and able to share our deepest thoughts and bear our soul without fear of judgement or incrimination.

Rare Disease Awareness Day - Gaucher Disease

Elaine Benton | Posted 25.04.2015 | UK Lifestyle
Elaine Benton

I wear a smile as my shield, maintain a sense of humour for a coat of armour, and a strong fighting spirit is my sword. This is how I battle each day with two diseases; one rare and one extremely common. My life is no picnic, but one thing for sure, it's not dull!

There's No Room at the Inn!

Elaine Benton | Posted 21.02.2015 | UK Lifestyle
Elaine Benton

As adults we often view loneliness as a sign of failure, and a successful person is surrounded by a multitude of friends. In reality, this is not the case, for generally one has only a small handful of what can be considered loyal good friends, the others are merely acquaintances.

Fighting For Your Rights

Elaine Benton | Posted 16.02.2015 | UK Lifestyle
Elaine Benton

Different countries around the world with diverse health schemes, adhere to set rules and regulations. Learning how the system works where you live, and finding out what you're entitled to, are just the first steps, in what feels like a voyage into uncharted waters.