30 October, 2025
Living with EB
People with EB face multiple challenges. Alongside them, families and friends want to assist in optimising their quality of life and make life more comfortable.
What is EB?Epidermolysis bullosa (EB) is a rare, lifelong genetic condition that causes the skin to blister or tear at the slightest friction or trauma, even from seams in clothing, a light touch, or eating certain foods. Learn more. |
Determining the most effective treatments and early identification of complications is essential. A person with EB is supported by a multidisciplinary health team who work together providing guidance, physical care, resources and expertise.
Wound management is a major component of care for people with EB. This is because of the delicate nature of the skin and likelihood of recurrent wounding. Prevention and protection are key.
Capturing the assessment documentation, including images of lesions is essential to use as a baseline and to measure progress. These wounds have a high risk of changing from an acute healing wound to a chronic non-healing wound. These early symptoms need to be identified quickly and acted on promptly to prevent complications and avoid lingering wounds.
It is important to monitor both skin and wound changes. For example, some subtypes of EB have a risk of squamous cell carcinoma (SCC). These tumours are fast growing so early detection and treatment is crucial.
Finding a way to ensure succinct, relevant information is collated and delivered to the multidisciplinary health team is imperative to best support those living with EB and their family and friends.
Silhouette monitors wounds and enables early detection of complications
As a wound assessment and documentation system that images and measures wounds, Silhouette enables the close monitoring of skin changes and wound healing progress for people with EB.
Silhouette makes the recording of assessment findings quick and easy. The level of detail in the report can be tailored to what is needed by the support clinicians.
Reports and images can be shared across the appropriate multidisciplinary team members to help ensure the right treatment is given at the right time. There is a patient portal where an EB user or their family can record and send assessment findings.
Silhouette supports people with EB in clinical practice and research
- We’ve been involved in more than 10 clinical trials for EB. Read an earlier article.
- Silhouette provided the evidence to change wound care practice for an EB sufferer. Read the case study.
“Having the ability to show the development of suspicious wounds and getting them seen in time could honestly be the difference between life and death – it’s a game-changer.”
Mo Blishen, EB Clinical Nurse, New Zealand
We prepared this article as part of EB Awareness week, October 22-31, 2025. To help bring awareness to this painful and incurable contition our team turned our clothes inside out for EB. Wearing clothes inside out for a day highlights a daily reality for children with EB, who often wear clothing this way to avoid painful seams against their fragile skin.
