Stacey Harper

Thames Path Challenge - 100km Walk

Fundraising for Genetic Alliance UK - Rare Disease UK
£1,392
raised of £1,000 target
Donations cannot currently be made to this page
Event: Thames Path Challenge 2019, from 7 September 2019 to 8 September 2019
Participants: Martin Harper and Kerry Harper
We campaign for people with rare diseases to improve services, treatment and support

Story

As you'll see above, 1 in 17 people will be affected by a rare disease at some point in their life. The one that hits home for us is called Cushing's disease. 

Cushing's disease is the collection of clinical symptoms and signs resulting from a pituitary tumour that causes excessive amounts of the hormone cortisol to be released by the adrenal glands.

The signs and symptoms are weight gain (particularly around the midriff), puffiness of the face with a characteristic ‘flushed’ appearance, reduction in sex drive, irregular periods, thinning and bruising of the skin, stretch marks (particularly in the abdomen), muscle weakness (with wasting of the muscles in the arms and legs), excessive hair growth or loss, high blood pressure, high blood sugar or sugar diabetes and thinning of the bones 

Back in 2017 our lovely Mum started to notice a variety of symptoms which didn't seem to link together in any way. There was no obvious reason that she was experiencing these things.  Eventually after months of tests, visits to the doctor and hospital appointments, she was diagnosed with Cushing's disease. 

Last year was a tough time for our family, mum especially as she underwent 3 major operations to remove the tumour from her pituitary gland. Obviously as family it was a terrifying prospect for someone you love to have brain surgery once, let alone 3 times, in 3 weeks. The last operation involved complete removal of the pituitary gland to ensure the tumour was all gone. I know that mum won't want to hear how brave she was because that's not her at all, however she was an absolute trooper and was so honest with us all, through everything. 

Since the operations last year, she has spent a lot of time recovering and has come a long way. A lot of the symptoms have cleared and she is progressing each day. 

The three of us wanted to do something to show our gratitude for the health professionals and charities out there who are able to help people who have been through something similar to mum. We have chosen Rare Disease UK and would be grateful for any money that you could donate, however big or small. 

Thank you for reading. 

Martin, Kerry and Stacey. x


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About the charity

Rare Disease UK is a national campaign for people with rare diseases and all who support them. We believe that everyone living with a rare disease should be able to receive high quality services, treatment and support. Rare Disease UK is a campaign run by the charity Genetic Alliance UK.

Donation summary

Total raised
£1,392.00
+ £202.00 Gift Aid
Online donations
£1,392.00
Offline donations
£0.00

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