Sarah runs Vrynwy half for DEBRA

So why have I decided to sign up for a half marathon?!..

I have a skin condition called Epidermolysis Bullosa (EB) and want to raise awareness (& some money) for DEBRA who support the condition.

EB is a rare genetic condition and causes the skin to be very fragile and blister easily. I have EB Simplex which is the mildest form affecting around 3,500 people in the UK.  Whilst I (and my family) are some of the luckier ones, in warmer climates and during the summer months it can impact on daily life, makes walking very painful and can stop us doing certain activities.

EB is a group of life-changing and sometimes life-threatening skin conditions that cause the skin to become very fragile and tear or blister at the slightest touch. In mild forms of EB, such as mine, blistering mainly occurs on the hands and feet. However, the widespread blistering in more severe cases can make the skin vulnerable to infections and extensive scarring can occur. In severe cases, blistering can occur all over the body and even on internal organs. It can also mean a higher risk of developing skin cancer. At the moment there is no cure!

DEBRA UK provides care and support to improve quality of life for people living with EB, and to fund cutting-edge research to find effective treatments and, ultimately cure(s) for EB.

I have suffered with blisters for as long as I can remember, it can be really awful. Luckily, I generally remember the good times I had, and not the time spent bandaging my feet or feeling frustrated at not being able to walk. Thank you to my friends and family who are so patient with me!

So, I’m going to spend the summer taking very good care of my feet and have signed up to run Lake Vrywny half marathon. Certainly a challenge for someone with EB!

No matter how big or small your donation it will make a huge difference to DEBRA UK, and more than anything I want to raise awareness!

Thank you