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Joanna Barry avatar
Joanna Barry

Joanna's 100 miles for Scleroderma

I am walking 100 miles during the month of June for Scleroderma & Raynaud's UK (SRUK) because we need to find a cure for this condition

251 %
£1,255.00
raised of £500 target
by 60 supporters
Donate

Scleroderma & Raynaud's UK (SRUK)

We provide support and fund research to improve lives everyday

Charity Registration No. 1161828

Story

My son Mathew has Scleroderma so I have decided to walk 100 miles during the month of June to raise funds and awareness for Scleroderma. All of the money raised will go to Scleroderma and Raynauds UK, this is the only UK charity which raises funds for research and awareness for this condition.

Mathew was diagnosed with this condition 10 years ago. He had Raynuads when he was about 4, this is where blood flow doesn't get to the extremities, when he was 6 he picked up an infection and looking back, that is when his problems started with aches and pains, swollen glands. when we got diagnosed, it was an answer but also a very scary time. The realisation that there was't a cure and that this condition would affect him for the rest of his life was huge. Mathew regularly gets bouts of fatigue, the raynauds affects him every day and he often gets ulcers on the ends of his fingers. He has trouble swallowing his food and has had in excess of 20 procedures to stretch his esophagus, this is an ongoing symptom of scleroderma and we have been told that the muscle in the esophagus is dead and will never work again. He is on a lot of medication which comes with its own side affects and monthly blood tests.But we try and make the best of every day and every situation and try and stay positive and  we have met some lovely people along the way.  Mathew is now on the Youth Advisory board at SRUK to help give something back and give advice on being a young person with this condition. Please follow my progress during June on my Facebook  page ‘100 miles for Scleroderma’  thank you. 

Scleroderma is a rare, chronic disease of the immune system, blood vessels and connective tissue. 2.5 million people worldwide have Scleroderma and in the UK there are 12,000 people diagnosed. It is a autoimmune condition, meaning the immune system becomes overactive and attacks healthy tissue in the body. The name of the condition comes form the Greek 'slcero' for hard and 'derma' for skin. This hardening of the skin can be one of the first noticeable symptoms of the condition, as the body produces too much collagen.This excess of collagen can affect the skin, joints, tendons and internal organs. It causes scarring and stops the affected parts of the body from functioning normally.The symptoms of scleroderma vary for each person, and the severity depends greatly on which parts of the body are affected. As yet there isn't  cure just treatment of the symptoms but with awareness and fundraising we can hope for a better outcome for people living with this condition every day.

Any donation you can give will go towards helping other children like Mathew live better lives.

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