Brain Injury Care Provider

Understanding Epidermolysis Bullosa

Epidermolysis Bullosa (EB) is a group of rare genetic disorders characterised by the fragility of the skin, often metaphorically referred to as ‘butterfly skin’.

It’s a term that many of us may not be familiar with, but it’s a condition that there should be a greater awareness of.

EB at a glance

Epidermolysis Bullosa is not a single disease; it represents a group of inherited conditions, all marked by the common trait of skin fragility.

The skin of EB patients is so delicate that even the slightest friction can cause painful blisters and wounds, akin to burns, making everyday tasks a painful challenge for those living with the disease.

Types of EB

There are three main types of EB: EB Simplex, Dystrophic EB, and Junctional EB, each varying in severity and associated symptoms.

Some forms are mild with minor blistering, while others can be debilitating, causing severe pain, scarring, and other complications, such as malnutrition and infections.

  • EB Simplex (EBS) is the most common type of EB, with 70 per cent of patients diagnosed with EB having EBS. Common symptoms include blisters on the hands and feet, although other areas of the body can be affected too.
  • Dystrophic EB (DEB) is less common, with it only being diagnosed in 25 per cent of those with EB. Due to the blisters healing and creating heavy scarring, DEB can lead to the fusion of fingers and toes, as well as gum problems too.
  • Junctional EB (JEB) affects only five per cent of those diagnosed with an EB condition. It is split into a further two types – generalised sever and generalised intermediate. Those diagnosed with the former often don’t live past the age of three, whilst those with the latter can live a longer, if painful, life.

Diagnosing EB

For years, the path to diagnosing Epidermolysis Bullosa has been challenging, primarily due to its rarity.

The diagnosis often includes a skin biopsy and detailed genetic tests, which can be a stressful process for both the patients and their families.

However, early diagnosis can significantly improve the management of the condition and overall quality of life of those living with EB.


While there’s currently no known cure for EB, advances in medical research are gradually progressing to find an effective treatment for the disease.

Management of the condition is predominantly focused on preventing blister formation, managing pain, and treating complications as they arise. This typically involves a team of healthcare professionals including dermatologists, dieticians, and psychologists.

In more severe cases, wound care, nutritional support, and in some cases, surgery may also be required.

There has also been promising progress in gene therapy for EB, particularly for the most severe forms, although this is still in the experimental stages at present.

Here at Almond Care, we are well-equipped in supporting those with EB by creating care plans to give therapies and interventions to help those diagnosed live as independent and pain-free life as possible.

If you or somebody you know is living with EB and would like to discuss a care plan, please do not hesitate to contact us today.


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