HOME • EPIDERMOLYSIS BULLOSA • FRECUENTLY ASKED QUESTIONS
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[togglegroup][togglehead id=”FAQ” tab_id=”FAQ0″]What is Epidermolysis bullosa or EB[/togglehead][togglebody tab_id=”FAQ0″]EB is a rare, genetic and very painful incurable condition. It is characterized by the extreme fragility of the skin, mucous membranes and the internal linings that protect our organs. Open wounds and blistering are caused by the lightest touch. These heal very slowly and some remain open indefinitely. People with EB have skin that is as fragile as the wing of a butterfly.[/togglebody][/togglegroup]
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[togglehead id=”FAQ” tab_id=”FAQ1″]Other effects of EB[/togglehead][togglebody tab_id=”FAQ1″]EB does not affect cognitive development. The external effects on the skin are most prominent because this is visible on the outside, but other areas of the body can also be seriously affected. In the case of recessive Dystrophic EB, blistering occurs on the internal linings of the body including the mouth, eyes, anus and throat. This in turn causes severe eating and health problems.
However, some of the most distressing effects of the disease are the social and psychological consequences of living with EB.
The social effects can be devastating. Social isolation and loneliness are often a consequence of living with the disease, along with family relationship issues and the detrimental effect on working life. It is almost impossible to reconcile the number of doctor and hospital appointments that are required with full time employment.
This in turn affects family finances: Extra income is required to cover the cost of essential bandaging and treatments not supplied by the National Health Service. The frequent medical appointments and time spent in hospital mean it is very difficult to keep up at school and parents struggle to work.
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[togglehead id=”FAQ” tab_id=”FAQ2″]Is EB contagious?[/togglehead][togglebody tab_id=”FAQ2″]EB is not contagious. This is a hereditary, genetic condition, which means that you are born with it and it is not contagious to others. You cannot catch this disease through physical contact, playing in a park, from swimming pools or through any other means.[/togglebody][/togglegroup]
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[togglehead id=”FAQ” tab_id=”FAQ3″]Can family members be tested to find out if they are carriers of the gene?[/togglehead][togglebody tab_id=”FAQ3″]Testing is now possible. For further information on this contact info@debra.es[/togglebody][/togglegroup]
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[togglehead id=”FAQ” tab_id=”FAQ4″]Is there a cure?[/togglehead][togglebody tab_id=”FAQ4″]At the moment there is no cure. However, the importance of researching a cure is as important as researching the different ways in which we can improve the day-to-day lives of people with EB. We are looking to provide solutions and treatments to help with the immediate symptoms of living with this condition.[/togglebody][/togglegroup]
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[togglehead id=”FAQ” tab_id=”FAQ5″]Existing treatment options:[/togglehead][togglebody tab_id=”FAQ5″]Current available treatments are palliative. Daily treatment is based around the bandaging and care for blisters and wounds using medical supplies made specifically for patients with extremely fragile skin. This helps to treat the risk of infection, skin irritation and pain associated with the wounds.[/togglebody][/togglegroup]
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[togglehead id=”FAQ” tab_id=”FAQ6″]Genes connected to EB[/togglehead][togglebody tab_id=”FAQ6″]There are a number of genes associated with the skin, a defect in the genes can cause EB: Collagen, keratin, other proteins and cross linking of those genes. These are all responsible for the production of proteins which are so important for the structure of the skin.[/togglebody][/togglegroup]
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[togglehead id=”FAQ” tab_id=”FAQ7″]Can EB develop into a different form?[/togglehead][togglebody tab_id=”FAQ7″]No, EB cannot change or mutate into a different form. If the diagnosis is of a moderate from this will not change into a more serious type. Many of the symptoms are specific to the various types and they are all different.[/togglebody][/togglegroup]
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[togglehead id=”FAQ” tab_id=”FAQ8″]How is it diagnosed?[/togglehead][togglebody tab_id=”FAQ8″]A skin biopsy is taken to provide an accurate diagnosis. Confirmation of the diagnosis and the type of EB is available through blood tests and genetic testing.[/togglebody][/togglegroup]
[togglegroup][togglehead id=”FAQ” tab_id=”FAQ9″]How many cases of EB are there[/togglehead][togglebody tab_id=”FAQ9″]One in every 227 people are healthy carriers of one of the mutations responsible for the disease. In Spain there are between 500-700 people living with the condition.[/togglebody][/togglegroup]
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[togglehead id=”FAQ” tab_id=”FAQ10″]¿How does the charity DEBRA support patients and their families?[/togglehead][togglebody tab_id=”FAQ10″]DEBRA is a non-profit charitable organization that supports people with EB and their families. Click here for further information on our work.[/togglebody][/togglegroup]
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[togglehead id=”FAQ” tab_id=”FAQ11″]Research into a possible cure[/togglehead][togglebody tab_id=”FAQ11″]There a currently a number of different research projects taking place based on cellular, genetic and protein levels. The most recent clinical trial was in Germany in November of 2017. The dermatology team led by Michele de Lucas was successful in making a new skin for a seven-year-old boy using his own cells.[/togglebody][/togglegroup]
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[togglehead id=”FAQ” tab_id=”FAQ12″]I don’t live in Spain, where can I find help?[/togglehead][togglebody tab_id=”FAQ12″]EB affects people all over the world. DEBRA International is a worldwide organization. To find a DEBRA near you click here.[/togglebody][/togglegroup]
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[togglehead id=”FAQ” tab_id=”FAQ13″]We have just had a baby with EB and we would like to talk to other families[/togglehead][togglebody tab_id=”FAQ13″]We have been supporting families for over 25 years, please contact us on 952816434 or write to us at info@debra.es[/togglebody][/togglegroup]
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[togglehead id=”FAQ” tab_id=”FAQ14″]I am a doctor and I need information. What do I need to know before treating a person with EB?[/togglehead][togglebody tab_id=”FAQ14″]One of our key responsibilities is to provide information for health care professionals. Our nurses, social workers and psychologists are specialist EB professionals. They keep up to date with the most recent advances and best possible treatment options and are able to provide information for all types of healthcare professionals. Many Best Practice Guidelines for EB are also available through our team along with a list of healthcare professionals who are experienced in treating patients with EB. For information on EB please call 952 816 434 or write to info@debra.es [/togglebody][/togglegroup]
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[togglehead id=”FAQ” tab_id=”FAQ15″]How can I help?[/togglehead][togglebody tab_id=”FAQ15″]There are many ways to help and get involved, from fundraising to raising awareness or volunteering at one or our events or in one of our charity shops. Look at the many options available in our get involved section.[/togglebody][/togglegroup]
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[togglehead id=”FAQ” tab_id=”FAQ16″]How can I make a donation?[/togglehead][togglebody tab_id=”FAQ16″]Donations can be made at any time or you can become a Butterfly member and make monthly or yearly donations. For more information click on donate now.[/togglebody][/togglegroup]
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