Press Release: For Immediate Release
10th February 2015
Would you deny this child hope?
This General Election, DEBRA Ireland are challenging their local candidates to become #ebaware because without awareness there is no funding, without funding there is no research, without research there is no cure and without a cure there is no hope.
EB is a skin condition like no other. In those affected, the layers of the skin are not completely attached to each other, resulting in blisters and wounds from many of the daily activities that most of us take for granted, such as turning over in bed and swallowing. Children with EB experience daily pain and many die young from complications of the condition. The fragile nature of their skin, and of the children themselves, has led to the term Butterfly Children.
There are currently up to 300 families living with this condition nationwide. Currently there is no cure and the only treatment is constant painful bandaging of the skin. DEBRA Ireland is the only charity providing vital support and services to those living with EB.
Rachel and Casey Connors
Casey is a bright and inquisitive little three year old who was born with EB. Like all EB heroes she is also a real fighter. Her mum Rachel has also had to become a fighter. She describes the lack of awareness of EB as a huge obstacle when trying to gain access to supports.
The most recent battle Rachel is fighting is gaining access to appropriate housing for her and her two children. Due to the severity of Casey’s condition and the complex needs attached, the family require a specific type of house.
Rachel explains, “Living with EB is already tough enough on my family. Now we are faced with the real worry about how we are going to access appropriate housing.”
Unfortunately there is currently no appropriate housing available. Rachel believes that if our potential leaders become EB aware they would understand the challenges faced by families living with rare debilitating diseases and it would mean access to vital supports and entitlements.
When launching Ireland’s state programme for the 1916 Commemorations, Enda Kenny said “2016 will belong to everyone on this island and to our friends and families oversees”.
This celebration of community and inclusion needs to be extended to people living with EB. What better year than 2016 for the Government to take notice of some of society’s most vulnerable, deserving of their commitment to confine EB to the medical history books. It all starts with awareness. Casey is part of the next generation of Ireland . Don’t let her down.
To find out more about DEBRA Irelands #ge16 #ebaware Advocacy campaign visit www.debraireland.org/advocacy
Note to Editors:
Epidermolysis bullosa (EB) is a distressing and painful genetic skin condition causing the skin layers and internal body linings to separate and blister at the slightest touch. It affects approximately 1 in 18,000 babies born and can range from mild to severe. Severe forms can be fatal in infancy or lead to dramatically reduced life expectancy, due to a range of complications from the disease. Patients need wound care and bandaging for up to several hours a day and the condition tends to become increasingly debilitating and disfiguring over time. Adult patients with severe forms are also extremely susceptible to an aggressive form of skin cancer. There are currently no treatments or cure for EB.
About DEBRA Ireland
DEBRA Ireland is the patient support organisation, established over 20 years ago, to support families living with EB and to drive research into this currently untreatable condition. We are a patient-led organisation, with a strong, visionary Board of Directors and staff.
Due to EB being a highly complex and multi-systemic condition, the care of people with EB requires a multidisciplinary approach. This care is provided in specialist EB centres, in OLCHC for children and St. James Hospital, for adults which together cater for over 100 patients. These services have been championed by the extremely dedicated and experienced consultant dermatologists, Dr. Rosemary Watson and Prof. Alan Irvine with whom we work closely.
What we do
Our mission is to drive and support research into therapies for EB and, in the meantime, to do everything possible to alleviate the challenges of EB. We do this through:
- A 32-county Family Support Service
- Liaising closely with hospital services, providing funding and support when required e.g. staffing costs, equipment and training.
- Funding and supporting research. We have invested over 2.5 million in research and are currently working closely with researchers in UCD, UL and internationally.
- Advocating for improved care for people living with EB, particularly in relation to health entitlements and improved care in the home.
- Raising awareness of EB. We had a hugely successful EB Awareness Campaign last month (which you very graciously supported).
- Leading several projects on behalf of DEBRA International, including the development of international EB clinical practice guidelines.
- Being a leading voice in organisations whose mission aligns to ours e.g. MRCG, IPPOSI and GRDO.
For more information, or to arrange an interview with Rachel or a representative of DEBRA Ireland please contact Fiona Aherne, Advocacy Officer, DEBRA Ireland