In these videos we follow two patients with severe forms of epidermolysis bullosa (EB), a genetic extreme skin fragility disorder. The videos tells their story from three different angles: the patient's, the health care professional's and the institution's.
The two patients featured in the film both have recessive dystrophic EB (RDEB) which is a severe form of EB causing chronic wounds, anaemia, osteopenia, psuedosyndactyly and an increased risk of developing squamous cell carcinoma. People with RDEB have diminished or absent collagen V11 the major component of anchoring fibrils at the dermal-epidermal junction. Both patients and their family members were filmed whilst attending a multi-disciplinary team clinic (MDT) where they were seen by all the members of the EB MDT including; consultant dermatologist, plastic surgeon, dietician, physiotherapist, hand therapist, ophthalmologist, dentist, psychologist and specialist nurses.
The Rare Diseases Centre (RDC) at St Thomas’ Hospital, London, UK opened in November 2017. It is the first of its kind in the UK to provide a space designed for adults and children with life-long genetic and skin conditions that can also affect many organs in the body. One of the rare conditions treated at the RDC is epidermolysis bullosa (EB). This is a genetic extreme skin fragility disorder, leading to recurrent painful blisters and wounds as well as multisystem complexities. The new centre brings together several specialist services in one place, saving time and improving patient experience. A short description of the patient and treatment provided.
During 2018 and 2019, filmmaker Aurora Piaggesi visited a number of wound care clinics across Europe to interview patient representatives and the health care professionals and managers responsible for providing their treatment and care. The LWCW tour included clinics in Helsinki, Finland; Brno, Czech Republic; Montpellier, France; Geneva, Switzerland; Lincoln and London, United Kingdom.
The videos were presented at a focus session at EWMA 2019 in Gothenburg, Thursday 6 June 2019.
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