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Nov 7, 2024
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This is 🦋Emma🦋. When she was born, her parents were told she wouldn't last a week. Because of the continued support from her family and the EB community, she is now 35 years old and living the best life she can live 💪. Your support matters to her and all those with EB. You will never meet braver people than those living with EB (epidermolysis bullosa). | Debra Ireland - The Butterfly Skin Charity
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This is 🦋Emma🦋. When she was born, her parents were told she wouldn'…
93.6K viewsOct 23, 2019
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A very Merry Christmas from our Membership and EB Community Support teams 🌟 🎄 Wishing you all a peaceful holiday season. Thank you for being part of our incredible community 💙 | DEBRA UK
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A very Merry Christmas from our Membership and EB Community S…
475 viewsDec 25, 2024
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Our Community Support team are here to help EB families throughout their journey – whether they are taking their first steps, learning to write, or starting their first job. "DEBRA UK has been a lifeline, offering support grants for travel expenses and providing specialist items including sheepskin inserts for Albi’s car seat to make these journeys more bearable. Beyond the physical challenges, David has been a tireless advocate for Albi, explaining to local social workers about EB and offering
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Our Community Support team are here to help EB families througho…
7.1K viewsApr 15, 2024
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Sixteen-year-old Erica lives with recessive dystrophic EB — one of the most painful forms of this condition. EB affects every part of her life. Even eating and swallowing can cause wounds and unbearable pain. “It’s progressive, which means it gets worse as we get older. If Debra can get more funding, they can do more research for treatments, especially for younger children, so when they get older, their EB isn’t as bad as what my sister and I have.” EB affects the skin inside both and outside. I
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Sixteen-year-old Erica lives with recessive dystrophic EB — one of …
1.4K views6 months ago
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"I can only describe EB as like living in a nightmare." Hiba was born into a world of unimaginable pain. From the moment her life started, she fought against the excruciating pain caused by epidermolysis bullosa (EB). In a heartfelt interview from January, Hiba opened up about her passion for writing and her ultimate wish: one day, the pain of EB will vanish. Sadly, Hiba passed away on February 11th 2023, at the tender age of 14. But her dream lives on, and we have the power to make it a reality
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"I can only describe EB as like living in a nightmare." Hiba was born int…
9.5K viewsApr 26, 2023
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“EB doesn’t stop for Christmas. Your support has already brought hope to families like Darcie’s, but there’s still more to do." Please, if you can, make a donation today and help us reach more families this winter: https://bit.ly/4ikkEaP Thank you for standing with us, and Merry Christmas. 🩵 #DEBRAUK #TheLongestNight #EBawareness | DEBRA UK
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“EB doesn’t stop for Christmas. Your support has already brought …
22.9K views4 months ago
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"Having EB is difficult, but it doesn't mean I don't have a good life. I tra…
1K viewsOct 3, 2023
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Mental health support for people with EB can't wait. Will you help e…
4.7K viewsNov 21, 2024
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This #GivingTuesday, bring joy and belonging to kids living with EB. 💛 …
1.3K views5 months ago
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“EB stops me from having a normal life, and that is what I want." A life …
8K viewsOct 25, 2022
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Graeme and Isla discusses the horrors of EB in DEBRA appeal
Jun 16, 2023
Mail Online
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"The thing about EB is it is a battle, but it is a battle we are all fighting …
615 views5 months ago
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Where Is Debra Paget Now? Her Career, Retirement from Acting, a…
Jan 11, 2022
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Cora was brilliant, fiery and hilarious. EB took so much, but ne…
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Debra Winger Looks Unrecognizable As She Makes Sudden Return To …
Mar 4, 2024
doyouremember.com
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📢 Join DEBRA UK members like Katie and Jamie to complete the #EBpri…
1K viewsJun 26, 2024
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Darcie was born just days before Christmas with one of the most se…
297.5K views4 months ago
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“Imagine skin so fragile that even the seams on your clothes can ca…
335 views6 months ago
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“It gives me hope.” Lucy Beall, Cambridge masters graduate and …
679 viewsJun 17, 2023
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Through home videos and family photos, Elisabeth and Lucy Pol cr…
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If you do one thing this weekend, please take just 10 minutes to vot…
457 viewsNov 29, 2024
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25th-31st October is #EBAwarenessWeek2020, aimed a…
184.5K viewsOct 24, 2020
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“Living with EBS affects you mentally because when you can’t t…
742 viewsDec 6, 2024
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"Until we can find a cure and prevent this disease, we mustn't s…
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"A diagnosis has empowered me because it's a thing I can then say…
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"If you witness it, it's beyond belief, it really is. You would think this w…
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