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Epidermolysis bullosa (EB) is a group of extremely rare genetic skin conditions that causes the skin to blister and tear at the gentlest of touches. Children born with EB are often called ‘Butterfly Children’ as their skin can be as fragile as a butterfly.
The condition is listed as one of the top 10 most painful conditions in the world. Open wounds and sores form on the delicate skin and often complications form by infection and internal linings. In certain cases, epidermolysis bullosa can be fatal in infancy.
The three main types of EB include:
EB Simplex – The most common form of EB in which in most cases is inherited from a parent who has visible signs of the condition. In this type, blistering usually occurs in the neonatal period but can also manifest in child or adult life. Blisters are worsened due to rubbing, especially on the feet.
Dystrophic EB – DEB gets its name from the way the blisters heal. The scarring leads to the contraction of joints, contraction of mouth membranes, narrowing of the oesophagus and fusions of the toes and fingers. The severity of DEB varies and often worsens with age.
Junctional EB – Around 10% of people who have EB, have JEB. It is inherited from both parents who are carriers but do not show signs of symptoms. It can often be fatal and some babies may only survive the first two or three years of life. There is also a milder form of JEB which may not restrict life expectancy but can cause lifelong pain and disability.
Currently, there is no cure for EB. However, doctors may provide treatments to prevent any complications. These can include:
There are pieces of equipment and therapies to help ease your child’s pain. Working with a physical or occupational therapist can help your child learn to live with epidermolysis bullosa. Your child may also be prescribed pills to fight infection and relieve pain.
Unfortunately, not all of these treatments are available in the UK healthcare system. At Tree of Hope, we can assist you with raising the funds for vital medical equipment and treatment that will help your child.
Pippa has epidermolysis bullosa. With our support, her family raised £30,000 for a MicroSilk bath and house adaptations that will reduce stress, soothe her skin and allow her to have a private area to complete her daily dressings that are set up specifically for her needs. Find out more about Pippa and her story.
Contact Georgie in our Family Support Team on 01892 535525 to discuss starting your campaign.
