Video from the United Kingdom focusing on the patient's view.
Description
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.
Find more information on www.debra-international.org and www.debra.org.uk
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This video is part of EWMA's Living with Chronic Wounds (LWCW) project created by filmmaker Aurora Piaggesi.
LWCW aims to illustrate the experience of the wound patient in a number of recorded interviews with the patient and the health care professional(s) responsible for the treatment and care of the patient, as well as a representative of the health care institution.
More information available here: ewma.org/what-we-do/ewma-proj...
5 июл 2024
