Charlotte Northcut-Keen

Charlotte's page

Fundraising for BSSA - British Sjogrens Syndrome Association
£1,460
raised of £250 target
In memory of Yvonne Keen
We raise awareness of Sjögren's Syndrome to fund research and support sufferers.

Story

Thanks for taking the time to visit my JustGiving page.

In memory of my beautiful mother Yvonne Keen, who sadly passed away on 6th April 2020. My dad, my son and I would like to raise money for ‘The British Sjogren’s Syndrome Association’. The association was founded in 1986, as a registered charity, to raise awareness of the disease and support research into its cause and treatment. More often than not when mum told people about her condition, they had not heard of it and it was often difficult to explain this complex illness. I know mum would approve wholeheartedly of contributions being made to this cause, so thank you for any donation you are able to give.

Please read on if you would like to learn a little more about Sjogren’s.

Sjogren’s syndrome is an autoimmune condition. The bits of body usually affected are those that produce fluids, like tears and saliva. But other parts of the body, such as nerves and joints, can also be affected. 

Dry eyes caused my mum many issues-she would often be seen wearing sunglasses and a peaked cap as she was in discomfort when lights were too bright. The discomfort worsened when it was windy and the air was dry, so she would turn off the blowers in the car and couldn’t bear air conditioning - even on the hottest of days. Sadly, the dry eyes affected her so much that she lost her right eye. Despite this, mum never complained, so it was easy to forget that she only had sight in one eye. Mum would not let it get the better of her, though, and always enjoyed going to the cinema and enjoying a musical at the theatre!

Dry mouth is another factor for people with Sjogren’s. It can make you feel like food is getting stuck and you will need to drink water to help you swallow. It can also make your lips dry and sore. Mum would always have a large glass of water with her meals (she also had to drink a lot due to having kidney disease) and was forever putting vaseline on her lips. The worst thing for mum though, was how it altered how food tasted. For Mum, it was doubly hard as she also had coeliac disease. Not only did food already have no taste, she also had the struggle of trying to accommodate a coeliac diet. Prior to Sjogren’s, Mum had a healthy appetite - her favourite being fresh cream cakes! Mum was often on a weight loss diet, but sadly it was Sjogren’s that made her suddenly drop in weight, and then struggle to maintain
a healthy weight due to her limited food options.

Sjogren’s has also been linked to Raynaud’s Phenomenon which explains why, even on the hottest day, mum would often have a cardigan on and the house was always boiling hot with radiators ablaze!

Sjogren’s syndrome can also cause a range of other problems. From dry itchy skin, severe tiredness and exhaustion, through to muscle pain, and difficulty concentrating, remembering and reasoning. Mum always smothered herself in cream, but her main symptom was pure exhaustion. 

However, mum always lived her life to the full and I know all her friends and family would agree that she would never let Sjogren’s or any other of her disabilities get in the way of her having a fun, wonderful life!

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About the charity

Sjögren’s Syndrome is debilitating, distressing, under recognised and under treated. Glands that produce tears and salvia or secretions of the vagina, skin and bowel stop working, it causes muscle or joint pain, low mood and extreme fatigue. The BSSA supports sufferers and raises awareness.

Donation summary

Total raised
£1,460.00
+ £278.75 Gift Aid
Online donations
£1,460.00
Offline donations
£0.00

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