Blood-soaked bedding, this is what we wake up to on the daily. Sometimes it’s more, other times less, but this blood-soaked bedding is only a fraction of the blood my daughter loses daily. Sometimes I wonder “what’s the point of it all?”. Why try to prevent my little girl from scratching during the day when… Continue reading Helpless

When left untreated

Apart from her EB, I’d always thought my little girl to be quite healthy. What! With a healthy appetite and a healing body, why would I think otherwise? Until I heard those five words, that is. I’ve always known I was anaemic, but to hear that my daughter may be too was a bitter pill… Continue reading When left untreated

No more Ms Reactive

Whilst scouting for a place to tan sheep skin this week, I happened upon an important realization; in this field called EB,  one cannot be reactive! I never thought finding someone to do sheepskin tanning would be so challenging, I mean, I know sheepskin is sold at selected outlets in Cape Town, so there must be… Continue reading No more Ms Reactive

It’s more than just a blister

This evening I would like to make a special request; I’d like to ask that you keep my little girl in your prayers. The little fighter that she is, she rarely complains of any pain she may be experiencing. She bites it out and only whines when we’ve touched an open area or accidentally pulled… Continue reading It’s more than just a blister