My name is Liz, I am the Family Patient Ambassador for DEBRA Ireland. I have a 12 year old daughter, Claudia, with EB.
Claudia is a smashing girl, who loves all things pink and glamorous. But behind all the posing and loving the camera is a very different story. She is a girl struggling with her identity and in a lot of pain. Age 12 has brought a lot of questions and she is now very aware of how different she is and the challenges she faces on a daily basis. Every year of her young life has brought its difficulties and each stage in her life is an uphill struggle.
There was a time I used to think I could manage the disease and keep her in relatively good shape. Now I think I was naive and foolish as the only thing that manages this debilitating disease is the disease itself. It is totally in control with no warning and guarantees. To say that I have felt defeated at times is an understatement. Sometimes I’ve felt powerless over the condition, which can lead to absolute despair. One minute she can be in top form and all of a sudden she could have a horrendous fall or get a chronic infection. This in turn can lead to weeks of recovery. It’s a vicious circle with no end in sight.
Once Claudia started to verbalise her illness as she got older I thought we were in a better place, but again this is not true. We have new emotions and new problems that the disease has started to present. So to be honest I have had to accept that things will get worse as she gets older. As a family we try to keep it ‘in the moment’ and not look to far ahead. EB is a race against time.
DEBRA Ireland provides fantastic support to our family. They have the finger on the pulse in terms of medical treatments coming on stream. They keep us informed of new treatments and research findings. They are constantly trying to help families affected by EB. The charity has evolved more in the last 12 months that I have seen in the past. The families are communicating with each other and the charity really well, which is vital for such a specialised group.
DEBRA Ireland is striving towards a cure which we all long for, but also for the best possible care for our adults and children living with EB.