DEBRA South Africa
Inspiring Impactful Change
About
Founded in 2020, DEBRA South Africa aims to support patients living with Epidermolysis Bullosa (EB) in South Africa. The core of our work lies in the continuous passion and dedication we bring to the range of projects we take part in. Please join us by supporting our efforts to make a meaningful difference in the lives of our members.
What is EB
EB is a group of rare disorders with many genetic and symptomatic variations. All types of EB are characterised by fragility of the skin and mucous membranes that blister and tear from mechanical friction or trauma. In the more severe cases, patients succumb to the condition by their third decade of life, while in the most severe cases mortality occurs in the first few months of life.
Types
It comprises four main types - EB simplex (EBS), junctional EB (JEB), dystrophic EB (DEB), and Kindler EB (KEB), with more than 30 subtypes.
EB acquisita (EBA) is the only non inherited type of EB. It is an autoimmune disease, which does not usually appear until later in life. It is unknown exactly what causes it.
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Complexities
There are a number of secondary illnesses and manifestations that require treatment from a range of medical specialists.
Some of these include anaemia, alopecia, osteoporosis and cardiomyopathy.
Treatment
While there is very promising therapeutic development occurring today, there is no treatment or cure for the overall condition.
Symptom relief like pain management, wound care, and preventative bandaging are the only treatment options available.
Living with EB
Epidermolysis Bullosa affects every area of life.
DEBRA UK has a wonderful array of support documents to assist you. These documents offer ideas and information around many areas of living with EB. Some of these areas include walking, eating, sleeping, clothing, school life, work life, financial implications, emotional and social aspects.
EB in South Africa
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"Living with EB in South Africa, I’ve felt alone, prejudiced and ostracised because of my skin condition. I’ve always wanted to hide, cover up, and not be seen, because I’d always know the uncomfortable stares I’d get from people. I’ve been spit at, laughed at and isolated as a child because I was too abnormal to be with other kids. It used to hurt, it still does but you learn to live with it."
Phumeza | EB Simplex
What We Do
DEBRA South Africa works to
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relieve physical and mental distress among patients suffering from EB by the provision of practical advice, guidance and support.
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affiliate with other groups & organisations that have the same aims.
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create awareness of EB among the general public.
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promote and foster cooperation and information exchange among those who suffer from EB with organisations and medical professionals who support them.
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organise meetings, seminars, conventions and similar gatherings that help EB patients, their families, friends and donors.
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source sponsors and supporters.
