Hiba's wish

My name is Hiba. I am 14 years old, and I was born different, the doctors at the beginning said I was OK, that I was like any other ‘normal’ baby, but I wasn’t, I was born with epidermolysis bullosa (EB), a very painful skin disease. It causes my skin to tear and blister at the slightest touch.

My parents weren’t expecting it, in fact, my mum apparently fainted when she saw me, and my dad was really sad because he just didn’t expect this to happen to his daughter.

I can only describe EB as like living in a nightmare. EB is a horrible disease; the worst bit is the pain and the itch. Sometimes the pain is constant, and it just doesn’t go away. It can feel like having pins and needles but all over my body, sitting and walking can be difficult due to the blisters and wounds.

Popping my blisters does give me some relief from the pain, but I also get blisters on the inside of my body, on my tongue and lips, which makes it difficult to eat, to swallow, and to brush my teeth. I am given gels to help relieve the pain, but they don’t work for me.

Living with EB means I need help, help with everything basically, even the smallest things I cannot do. My parents have to be there for me 24/7. I need help getting up, walking, going to the toilet, getting a drink, and opening things with my fingers because the EB closes my skin. I also need help with getting my dressings changed. I am so very grateful for my parents as they help me with everything.

EB stops me from doing the things I would like to do, like going to school. Many 14-year kids would probably like to have a reason not go to school, but not me, I want to be in school because most of the time I’m in hospital.

I have been in hospital for nearly three months now after a major operation, and I am so looking forward to being back at school, and seeing everyone again, because I miss them all. They always send me messages to ask how I am feeling and when I’m returning to school, but I don’t have an answer for when I will be back.

In the future, I would like to be a scientist so that I can help people. I want to help people because people help me and I want to help find a cure for EB, because people can’t live like this anymore, there has to be a solution and a way of stopping so many people suffering so much.

• Hiba El Mansouri Sghiar – January 2023

Tragically, Hiba never did go back to school and died aged 14 on Saturday 11th February 2023 surrounded by her family who loved her so dearly.

Hiba loved writing, whether it was stories or poetry, and one of the last poems she wrote was about her imagining what it would be like to not feel any pain and her wish that one day the pain of EB would disappear altogether.

Please help make Hiba’s lasting wish come true.

With your support we can clinically test the drugs already available within the NHS to treat other inflammatory skin conditions such as psoriasis and atopic dermatitis (severe eczema), as we believe they could significantly improve blistering and overall quality of life for people living with EB too.

Thank you.

Hiba had recessive dystrophic epidermolysis bullosa. Find out more about the four main types of EB.