My name is Hanaa el Sadat , i will tell you the steps that i went through to learn about the proper care for EB. I never thought after having birth to three boys EB , to have my fourth child born with this disaster Epidermolysis bullosa rare skin disease.
The story of how I discovered best management steps can best be told perhaps by going through the stages of Yasmin.
After I discovered Yasmin had EB , it was very difficult thing to find someone who could tell me what to do to care and handle my baby. So many things I needed to know; so very few people who knew and so very few places to go with miner knowledge from doctors to advise.
I started to read and learn that not every EB child can be treated the same , although there are very important steps to apply to prevent skin friction .
The first thing that came to my mind was to find a way to reduce her skin contact with things. I first started using cotton, but that was a mistake as cotton clung to her skin. Then I started to use regular gauze , it worked to a certain degree up to the time she started walking. From falling frequently, I was obliged to bandage her from head to toe to prevent her from any injury and made her comfortable to move freely. She got used to that when she felt secured. As Yasmin’s hands were growing, I found that her fingers were fuse together. After medical consultation, we decided to that an operation was necessary to help the fingers to be separated to be able to draw and color as it was her hobby.
Yasmin went to school and was a good and behaved student , every one at the school loved her and cared for her as well.
Yasmin was my precious daughter , I absolutely adored her. She was born in September 1st 1997 and was unfortunate enough to come into this world with an extremely rare skin blistering disorder called “Epidermolysis Bullosa” , or EB for short. First , I didn’t realize she was not normal but the pediatrician when he saw her , he said this girl had EB. Then we asked a dermatologist to investigate the condition, he replied ” it is EB but the simplex type and by age she will be improved”. It was for me and her father (an Ophthalmologist) the first time to hear such a disease.
The primary goals that we decided to take of EB care are:
protection of the skin against trauma, prevention of
infection, maintaining the highest possible level of nutrition and avoiding dietary
complications, minimizing deformities and contractures, and lastly, sustaining a strong
support system and a positive attitude. Many of the complications of EB can be lessened
or even avoided with proper early intervention and care.