Skip over main navigation
  • Log in
  • Basket: (0 items)
  • Contact us
DEBRA UK
Tagline goes here! Become a member Find a store Find an event DONATE Contact us
  • Twitter
Menu
  • Emergencies
  • EB support
    • Become a member
    • About EB
    • Support for you
    • Treatments & healthcare
    • Get involved
    • DEBRA Holiday Homes
    • Meet others with EB
    • Knowledge hub
  • Healthcare professionals
    • EB patient management
    • Specialist healthcare
    • Training events
    • Clinical Practice Guidelines
    • Additional resources
  • EB Research
    • Our research
    • Apply for research funding
    • Get involved in research
    • Types of therapies
    • Research news
    • Research blogs, podcasts & videos
  • About us
    • Who we are
    • Our people
    • Work with us
    • How we are governed
    • DEBRA Scotland
  • Support us
    • Donate
    • Fundraise
    • Gifts in Wills
    • DEBRA lottery
    • Volunteer
    • Events
    • Corporate partnerships
    • Trusts & foundations
  • Shop
    • Find a store
    • Furniture collection
    • Donate items
    • Our eBay store
    • DEBRA Christmas Cards
    • Volunteer in our stores
    • Why shop with us
  • News & blog
    • News
    • Blog
    • In memory
  • Admin
    • Log in
    • Contact us
  • Basket: (0 items)
  1. Home
  2. Member stories of living with EB

Member stories of living with EB

Meet some of our members who share their experience of what life is like living with EB.

Contact us via [email protected] if you would like to share your own story.

Hiba's story

Hiba's story

Hiba shares what it is like to live with Recessive Dystrophic EB and the support from doctors, her family and DEBRA’s Community Support Team, her enjoyment of school and her dream to cure EB. Read more

Published: 25th January, 2021

Updated: 8th June, 2023

Author: Kat Heppinstall

Fazeel's Story

Fazeel's Story

My name is Fazeel and I have EB – a condition which makes my skin blister and tear really easily. When I’m older I’m going to be a doctor and cure EB. Read more

Published: 26th January, 2021

Updated: 29th March, 2023

Author: Wendy Garstin

Isla's Story

Isla's Story

We’re a normal family. Our children, Isla and Emily, go to school, have their friends round and like to play on the trampoline. But when one of your children has EB, you have to redefine normal. Read more

Published: 26th October, 2021

Updated: 27th April, 2023

Author: Kat Heppinstall

Ayaan's Story

Ayaan's Story

Every week thousands of kids walk to school; for Ayaan, this short journey is impossible. Read more

Published: 29th October, 2021

Updated: 8th June, 2023

Author: Kat Heppinstall

Gabrielius' Story

Gabrielius' Story

Gabrielius is just like other kids. He's energetic and smiley and he loves to play football. But his skin is as delicate as a butterfly's wing. Read more

Published: 29th October, 2021

Updated: 8th June, 2023

Author: Kat Heppinstall

Maya's Story

Maya's Story

I am a freelance model and an advocate for EB. I spend my time using my modelling and social media platform to spread awareness and educate people on EB. Read more

Published: 29th October, 2021

Updated: 8th June, 2023

Author: Kat Heppinstall

Freddie's Story

Freddie's Story

Freddie’s mum and dad struggled with his diagnosis and worried about how they would cope financially. But they feel confident knowing they can call DEBRA whenever they need support. Read more

Published: 29th October, 2021

Updated: 26th September, 2022

Author: Kat Heppinstall

Henry's Story

Henry's Story

EB has definitely been an emotional as well as a physical challenge for me. Things can seem very dark at times, and believe me when I say I know, but being able to talk about it can make all the difference in the world. Read more

Published: 29th October, 2021

Updated: 26th September, 2022

Author: Kat Heppinstall

Heather's Story

Heather's Story

Everyday activities, like standing, walking and even holding a pen, can give Heather agonising blisters. Sometimes the pain is so bad she crawls on the floor to take the pressure off her feet. Read more

Published: 29th October, 2021

Updated: 8th June, 2023

Author: Kat Heppinstall

Tom's Story

Tom's Story

Tom's words on how it is living with epidermolysis bullosa simplex. Read more

Published: 29th October, 2021

Updated: 2nd May, 2023

Author: Kat Heppinstall

Leslie Paine

Leslie Paine

Living with Dystrophic EB is an unimaginable roller coaster for Leslie Paine. Read more

Published: 3rd November, 2021

Updated: 29th March, 2023

Author: Kat Heppinstall

The Talbot Family

The Talbot Family

Karen and Simon Talbot talk about losing their son Dylan to Junctional EB aged 3 months and 1 day. Read more

Published: 3rd November, 2021

Updated: 8th June, 2023

Author: Kat Heppinstall

Back to top

Latest

  • Dine with DEBRA lunch aboard the Fingal, Edinburgh raises £20,000

    Dine with DEBRA lunch aboard the Fingal, Edinburgh raises £20,000

    We’re thrilled to announce our dine with DEBRA lunch aboard the floating Fingal hotel in Edinburgh has raised £20,000 towards our A Life Free of Pain appeal.

  • Your feedback is vital

    Your feedback is vital

    We welcome your feedback. Please let us know if you have any suggestions for improvements to our EB information. We’d also love to hear from you if you think we are doing something well.

  • DEBRA Fight Night 2023, hosted by Frank Warren, raises over £180,000

    DEBRA Fight Night 2023, hosted by Frank Warren, raises over £180,000

    We're delighted to announce that our annual Fight Night event has raised over £180,000 to help #FightEB, making it DEBRA's most successful Fight Night in 15 years!

  • DEBRA SLT members meet with Jennie Minto and Bob Dorris at Scottish Parliament

    DEBRA SLT members meet with Jennie Minto and Bob Dorris at Scottish Parliament

    We took a further step on our government campaigning journey today (Wednesday 22nd November) with a meeting held at the Scottish parliament with Jennie Minto MSP for Argyll and Bute and Minister for Public Health and Women's Health in Scotland, and our meeting sponsor, Bob Dorris, MSP for Glasgow Maryhill and Springburn.

Most read

  • Find a store

    Find a store

    Find your nearest DEBRA charity shop and help fight EB. Our stores sell affordable and quality pre-loved clothing, furniture, electrical items, books, homeware and more.

  • Furniture collection

    Furniture collection

    Donate your unwanted furniture, homewares and electrical items using our free furniture collection service. With safety measures in place, donating your items couldn’t be easier.

  • Items we do not sell

    Find out what health and safety standards and labels we require and which items we cannot sell.

  • Graeme Souness swimming the English Channel  to raise £1.1m to stop the pain of EB

    Graeme Souness swimming the English Channel to raise £1.1m to stop the pain of EB

    Graeme Souness, ex-international footballer, manager, and pundit, is swimming the English Channel this June to raise £1.1m to stop the pain of epidermolysis bullosa (EB).

  • What is EB?

    What is EB?

    Epidermolysis bullosa (EB) is a painful genetic skin blistering condition with no cure. Find out about different types of EB, causes, symptoms and treatments.

  • Contact Us

  • Donate items

    Donate items

    Donate your quality pre-loved items, including clothes, furniture and homeware to keep them from landfill and help us to raise vital funds through our stores. Find out more about how to donate items today.

  • Work with us

    Work with us

    DEBRA can only continue its vital work with the support and encouragement of the local community and with the hard work of its employees and volunteers.

  • Imagine your skin being in constant pain? No one should have to live like this

    Imagine your skin being in constant pain? No one should have to live like this

    Imagine a dozen surgeries in less than a decade? No one should have to live like this. Please help us find treatments to #StopThePain.

  • Become a member

    Become a member

    If you or a family member live with EB, are a carer or someone who works with people affected by EB, then you can become a DEBRA member. Find out how.

Tag cloud

Wheelchair accessible

Stay in touch

We would like to keep you updated by email about our news, events, activities, and how you can support us.

You can unsubscribe at any time. To learn more about how we'll use your data, read DEBRA's privacy policy.

Alternatively, become a member to receive information tailored for people living and working with EB. 

 

 

Helpful links

  • About us
  • Careers
  • Our reports
  • Our policies
  • Contact us

Our stores

  • Find your local store
  • Furniture collection
  • Become a volunteer
  • Donate items
  • Why shop with us

Get involved

  • Join an event
  • Fundraise for us
  • Corporate partnerships
  • Leave a legacy
  • Raise awareness
  • Sitemap
  • Accessibility
  • Terms & conditions
  • Privacy policy
  • Cookies
  • Modern Slavery

  • Facebook
  • Twitter
  • Instagram
  • LinkedIn
  • YouTube

Fundraising regulator logoAssociation of Medical Research Charities logo Chartered Institute of Fundraising logo  CAF International - Validated organization badge

DEBRA is registered as a Charity in England and Wales (1084958) and Scotland (SC039654).

Company limited by guarantee registered in England and Wales (4118259).  © 2023
Registered office: DEBRA, The Capitol Building, Oldbury, Bracknell, Berkshire, RG12 8FZ

Manage Cookie Preferences