Children’s hospices support families living with a wide range of rare and complex conditions, from metabolic disorders to rare genetic conditions.
What these families often have in common though, is the experience of navigating systems that don’t always know their condition, and of falling through the gaps of services that weren’t designed with them in mind. Epidermolysis bullosa (EB) is one such condition, and it illustrates just how far we still have to go.
What is Epidermolysis bullosa?
Imagine skin so fragile that a simple hug could cause a blister. That is the reality for children living with EB. It is a rare genetic condition – frequently described as “the worst condition you’ve never heard of” – in which the skin blisters and wounds with the slightest contact. There is no cure for this condition.
There are over 30 different types of EB, ranging from manageable to more severe. For children with EB, they may be living in constant pain with open wounds across their body. To help manage the condition, hours of intensive dressing changes need to be undertaken every single day.
For 68% of people with EB, chronic and unrelievable itch is a daily reality. And for those with the most severe form of the condition, the wounds that never fully heal can become cancerous, and that cancer is the leading cause of death.
The families we are not reaching
Debra UK is the national charity supporting people living with EB. Through their work with families across the country, they have a unique picture of just how many children are missing out on hospice support. In fact, they estimate that around 175 children in the UK may meet hospice eligibility criteria. However, only 14 are known to have accessed hospice services in the last five years. This is not a coincidence – it reflects a lack of awareness in both directions: hospices that may not know enough about EB, and families who are not aware that hospice care is an option for them.
What hospices can offer
For families living with EB, hospice involvement can provide:
- Skilled nursing support with complex dressing changes.
- Vital respite for exhausted parents and carers.
- Specialist pain and symptom management.
- Hydrotherapy pools which can offer significant comfort.
- Connection with other families who understand what it is like to manage life with a seriously ill child.
Below, watch Amelia and Holly from Debra UK discuss EB, the impact on families and how hospices can help – presented as part of the Together for Short Lives ‘Together We Learn’ webinar series.
Get in touch
If you work in a children’s hospice and would like to know more about supporting children with EB, contact Debra UK.