We want to take time out to celebrate all the incredible women involved in fighting for those living with EB.
Happy International Women’s Day to all the ladies out there advocating, caring, researching and fundraising for our EB families. Your support is improving the lives of all those living with EB.
Dr Irene Lara-Sáez is part of a team of researchers in UCD who have produced a revolutionary solution that uses gene therapy to repair bad cells, transforming them into fully functioning ones. The key development was a new way of delivering a “genetic scissors” via a topical gel/cream to cut out the non-functioning part of a gene and then the repaired cells know to fill that space and permanently repair the gene. The best part of this therapy is that it would not involve painful skin grafting procedures or risks associated with viral treatments in delivering functioning genes to the skin. As with all research the aim is to find an effective treatment and one day a cure.
In view of the complexity and variety of ways in which EB affects individuals and families a specialised multi-disciplinary team approach is required. The medical teams in Our Lady’s Children’s Hospital Crumlin and St James’ Hospital are available to support EB patients at traumatic times in their life, whether during a hospital admission for surgery or as they embark on the challenges of finding suitable employment or set about converting a room into a wheelchair accessible bathroom. We work very closely with the clinical teams and frontline staff to ensure we remain aligned with patients needs.
There’s no cure for EB. So, that means constant painful care and treatment plans. Infection is always an imminent and catastrophic danger. Blisters must be lanced so they don’t expand to damage adjoining skin. Wounds need to be treated and wrapped in special dressings to prevent infection – usually every second day. EB demands around clock care and it often falls to the parents – mums and grannies play a vital role in this care.
Our patients are strong, brave and fierce. Sometimes every part of their body is in severe pain. Nothing prepares you for the heartstopping bravery and strength and love that children and families with EB show daily. Their determination to live every day as best as they can to live the best life they can is an inspiration.
You, our supporters
DEBRA Ireland receive no guaranteed state funding so rely heavily on the support of the general public. We could not provide the care we do without you and the lives of our families would be vastly different without you. Whether you take part in one of our events, donate, volunteer, visit our charity shop, organise your own event or simply tell people about EB, your support makes a difference.