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Right now, people with EB are struggling without the mental health support they desperately need. 55% report that this cruel condition impacts their emotional wellbeing and many cope in silence*.
EB isn’t just physical pain, it’s mental pain too.
Symptoms change throughout the year, often worsening when it gets warmer, which makes it hard for others to understand the constant, unpredictable challenges of living with EB.
Mental health support isn’t just important – it’s critical. It’s a lifeline and your donation today will make a difference. With your help, we can provide vital mental health support and ease the physical symptoms of EB.
Sarah lives with epidermolysis bullosa simplex (EBS), the most common type of EB:
“My EB might not always be visible, but the physical and emotional toll is all too real. I’m not alone in this; my dad, brother and uncle all have EBS. Living with EB forces you to make sacrifices every day that others don’t even think about. Simple activities like walking, require careful planning because it’s so painful. A day on my feet can lead to a prolonged period in a wheelchair. It affects not just me, but my family and friends, who must adjust their plans for me.
The constant pain leads to negative thoughts. As a teacher, I can’t afford to develop blisters that make standing or walking nearly impossible, which adds another layer of stress. My EB affects my feet, and it’s truly debilitating.
Through DEBRA UK, I’ve connected with others who have EB, which makes me feel less isolated, and I’ve been officially diagnosed with EB, which has been empowering and life changing. Before, I constantly thought, ‘what’s wrong with me?’, I felt inadequate. Now I can say ‘I have EB’ and I have accepted that I cannot do certain things. It’s given me the ability to explain my condition and be kinder to myself.”
Sarah’s story is all too familiar. Many people with EB suffer in silence, without access to the mental health support and essential items they need to manage their condition.
Your donation could fund counselling sessions, or EB community events to connect and share experiences. It could also help provide grants for specialist items that alleviate physical pain.
Your gift today could ensure that no one facing EB is left without the mental health support they need.
Together, we can ensure that people with EB no longer face this battle alone.
Every donation you make will be matched up to £8,000, doubling the impact of your gift. Please give whatever you can to help us provide the mental health services and specialist items that are so urgently needed**.
* According to the 2023 insights study.
** Your donation will be used to improve quality of life for people living with EB.