Daisy's story

Daisy's mum Tanya describes living with EB Simplex and the difficulties in getting people to understand how seriously the condition can affect her daughter.

EB Simplex is something that runs in my family.

When I had my daughter Daisy I new there was a 50% chance that she would have the same condition but hoped that she wouldn't. Up until Daisy was 13 months old and still not walking I thought that she was clear of it. However, one day when I put her in my car and she didn't have shoes on, I noticed a large fluid filled blister on the ball of her foot and I just knew that my precious daughter had EB Simplex too. I was absolutely devastated for Daisy as I knew that this meant her life would have limitations not to mention pain.

Daisy is now 8 years old and it breaks my heart when her feet get covered in blisters and I see her limping around in agony trying to keep up with her friends. I wish that I could make it all better for her but I can't. All I can do to help is burst her huge blisters and bathe them daily and administer pain relief (she has now been prescribed Tramadol, an opiate-based pain reliever for when the pain is very bad).

Getting Daisy to and from school in the spring and summer months is very difficult. We live only a 5 minute walk away and yet this short walk can cause so much blistering and pain for Daisy. The school are aware that Daisy cannot always conform to school regulatory shoes and let her wear whatever she feels most comfortable in. When I wait at the school gates for Daisy and she comes out limping and tearful because of her feet I want to cry too but instead I stay strong for her but inside I feel awful.

I find that non-sufferers of the condition really don't understand. Sometimes Daisy's feet are so horrendous though she will hardly have walked anywhere and even my husband will ask how they have got so bad. People just can't comprehend that Daisy only has to walk to the end of the garden and back in warm weather to rub up blisters that most people wouldn't get even if they ran the marathon in the searing heat!

Daisy's doctor was quite fascinated when I took her to him about her condition. He said that when studying to be a doctor he remembered attending a seminar about EB but that Daisy was the first person he had come across with the condition. After he said this I turned to Daisy and gave her a smile and said "see Daisy, you are special", she seemed happy about this.

I do worry about when she goes to Secondary school as I know that this is going to be a challenge for her in the spring and summer months, especially as she will be going through the most sensitive years of her life, and will want to be independent and keep up with her friends as well as fashion. Having EB means that Daisy's sporting activities, career choices and travel will be limited.

Despite her condition Daisy is a confident and loving girl. I have always encouraged her not to feel sorry for herself and I am sure that she will adjust and find a way of coping with EB Simplex.