On a recent episode of Disability Matters, host John Comiskey spoke with Alejandra Livschitz, Head of Strategic Communications at Debra Ireland. The conversation offered deep insights into epidermolysis bullosa (EB)—often referred to as the “butterfly skin” condition—and the vital work Debra Ireland does to support individuals and families living with it.
What is EB?
EB, short for epidermolysis bullosa, is a rare genetic skin condition. People with EB lack certain proteins that act as the “glue” holding layers of the skin together. This means even the slightest friction or trauma can cause painful blisters, tears, or wounds.
“We’ve all had a blister from a shoe—imagine having them all over your body, every day,” Alejandra explained.
EB can range from mild to severe, sometimes limiting movement, causing chronic pain, or even requiring the use of a wheelchair. In Ireland, it’s estimated that around 300 people live with EB, though the true number may be higher due to underdiagnosis.
Living with EB
The condition doesn’t only affect the individual but also their families and caregivers. Parents often face the difficult balance between protecting their children from harm and allowing them to play and enjoy life.
Some families make adjustments to their homes—such as avoiding stairs or sharp corners—while others focus on allowing children to experience life fully, treating wounds afterward.
Types of EB
There are four main types of EB:
- Simplex EB
- Dystrophic EB
- Junctional EB
- Kindler EB
Each presents different challenges, but all are life-altering and require ongoing care.
Support from Debra Ireland
Founded in 1988 by parents of children with EB, Debra Ireland has grown into a lifeline for the community. It offers:
- Family Support Services – emotional, practical, and financial help, including respite breaks, psychological support, and grants.
- Peer Support Networks – events that bring families together to share experiences, tips, and encouragement.
- Medical Alert Cards – to ensure healthcare providers understand the specific needs of people with EB.
- Advocacy & Research – pushing for better services and funding research aimed at treatments and, ultimately, a cure.
“Without research, there isn’t hope,” Alejandra noted, highlighting the organisation’s commitment to funding innovative projects.
The EB Butterfly Review
Debra Ireland recently commissioned the EB Butterfly Review, an independent study to map existing supports, identify gaps, and create a roadmap for better services. The findings will be launched in October at the Oireachtas, alongside Debra’s Inside Out campaign.
The Inside Out Campaign
Inside Out is a simple but powerful awareness and fundraising initiative. Participants are encouraged to wear their clothes inside out for a day, symbolising how people with EB often wear clothes inside out to avoid seams rubbing against their skin.
This campaign sparks conversations about EB and helps raise vital funds to support Debra’s work.
A Message of Hope
For families receiving a new EB diagnosis, Alejandra’s advice is clear:
- Don’t rely on Google—go directly to Debra Ireland for accurate, compassionate support.
- Connect with others—peer support can be invaluable for both practical advice and emotional strength.
- Know you’re not alone—Debra Ireland is there from diagnosis and for as long as families need.
Final Thoughts
Alejandra emphasised that the more EB is spoken about, the less isolating it becomes for those living with the condition.
“With rare conditions, there can be stigma. But awareness changes things—it turns a stare into a chance to ask, ‘How can I support you?’”
To learn more, access support, or get involved, visit www.debra.ie.