Epidermolysis bullosa
2. Didactic materials
Patients’ testimonials
For each CPG recently published, complementary guides for patients destined to be used by people with EB, their families and carers are being designed. These guides “translate” the information and the recommendations of the CPG to a style and format of language more adequate for a non-specializedpublic.
Also, a series of infographics have been created about EB. They are very similar in content to the guides for patients, but they are more based on icons/pictures. Although they are targeted for people who live in environments with low resources, the information is still relevant to any person living or taking care of someone with EB anywhere in the world and can be used as a quick and simple reference guide about care in EB. They can also be useful to share with relatives, friends, educational staff and co-workers so that they can understand these diseases better.
Both the patients guides and the infographics on EB are available in wide variety of languages.
The information and recommendations of the patients guides and the infographics on EB are directly derived from the clinical practice guides (CPG) on EB.
- Podiatry: The skin affected by EB is prone to the formation of blisters and scars in areas exposed to recurrent pression or friction, like the feet. The toenails can also be affected. There are some methods that can limit the creation of blisters and the pain and discomfort they produce, as well as treatments to manage dystrophic nails and hyperkeratosis: https://www.debra-international.org/foot-care-in-eb
- Dystrophic nail care
- Hyperkeratosis (callus) care for adults living with EB
- Footwear advice for parents caring for a child living with EB
- Footwear advice for adults living with EB
- Laboratory diagnosis: The laboratory diagnosis is essential to determine the type of EB and the precise cause at an DNA and protein level. This is important for the precise genetic advise, the prediction on the severity of the disease, the personalized medication and the continuous treatment, and the participation in clinical trials: https://www.debra-international.org/laboratory-diagnosis-in-eb. Available in English, Spanish, French and Dutch.
- Occupational therapy:Occupational therapy (OT) helps people to improve their participation in their day-to-day activities. They can find ways to change an activity, an environment or the abilities of a person to make their participation possible. Living with EB means finding yourself with barriers making it difficult to take part in certain activities: https://www.debra-international.org/occupational-therapy-in-eb
- Improving participation in daily activities for children living with EB
- Improving participation in daily activities for adults living with EB
- Psychosocial care: Psychosocial support means supporting the psychological, social, emotional and spiritual well-being. This is formed along the life of a person and it is influenced by environmental factors, as well as factors exclusive to each individual: https://www.debra-international.org/psychosocial-care-in-eb
- Support for parents caring for a child living with EB (English and Dutch)
- Support for adults living with EB (English, Dutch and Brazilian Portuguese)
- Support from your EB team/ healthcare providers (English and Dutch)
- Skin and wounds care: For many people with EB, the management of blisters and the bandages changes are activities which have to be done daily. Knowing how to prick blisters, manage different types of wounds and itching, prevent and treat infections and recognize possible cancer alert signals are crucial in the care of wounds from EB.
- Guidance for adults with EB and their carers (English, Dutch, Brazilian Portuguese, French and Swedish)
- INFOGRAPHIC – Healthy body and skin (English, Spanish, Brazilian Portuguese, French, Turkish, Chinese, Indonesian, Hindi, Urdu, Arabic)
DEBRA webinars
Some years ago, the YouTube channel for DEBRA Butterfly Skin was opened where different sensitization campaigns have been uploaded, as well as recorded speeches of our national meets. Also, from DEBRA, we have done several online seminars or webinars on the different areas (Social Work, Nursing, Psychology, Political action and Investigation) in order to continue updating the families and our community: https://www.youtube.com/channel/UC3gXW_9UhuXTemLKclRqy_w
DEBRA cure tutorials
In the YouTube channel, we can also find a series of tutorial videos on how to do the cures, both in paediatric age and adult one, which can help you solve certain doubts on how to develop the cure or some aspects of it, for example, the gastrostomy care: https://www.youtube.com/watch?v=HYpZJBH24Ms&t=22s