DEBRA South Africa
Inspiring Impactful Change
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.
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.
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.
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
"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
relieve physical and mental distress among patients suffering from EB by the provision of practical advice, guidance and support.
affiliate with other groups & organisations that have the same aims.
create awareness of EB among the general public.
promote and foster cooperation and information exchange among those who suffer from EB with organisations and medical professionals who support them.
organise meetings, seminars, conventions and similar gatherings that help EB patients, their families, friends and donors.
source sponsors and supporters.
What is EB?Epidermolysis Bullosa (EB) is a group of genetic skin conditions that causes the skin to blister and tear with any slight friction or trauma. EB comprises of four main types- EB simplex (EBS), junctional EB (JEB), dystrophic EB (DEB) and Kindler EB (KEB). The list of complications and secondary illnesses can be long and requires multiple interventions from a range of medical specialists. EB affects all genders and racial and ethnic groups equally.
What causes EB?EB is an inherited condition, meaning it may be inherited in either a dominant or recessive form. In dominant EB, one parent usually carries the gene and is affected by the condition themselves, while the birth of a child suffering from the recessive form is usually totally unexpected since both parents can carry the EB gene without displaying the condition themselves. In dominant EB, there is a 50% chance of passing the disorder to children: in recessive EB the chance is 25%. EB can also arise through a new spontaneous mutation – neither parent carries EB but the gene mutates spontaneously in either the sperm or the egg before conception. Rarely, a severe form of EB can be “acquired” as the result of autoimmune disease, where the body develops antibodies to attack its own tissue proteins.
What are the symptoms of EB?Symptoms vary depending on the type of EB. In the simple types of the disease, blisters can be confined to the skin and possibly mouth. These blisters will heal without permanently damaging the skin, although can still cause discomfort and pain. The more serious types of the disease occur at different, deeper layers of skin levels. This then causes more damage, as the blisters continue to enlarge until opened, destroying the outer skin as they do. They heal with scarring, faintly resembling burns, and in time the appearance of all the skin becomes changed. The scarring may cause severe deformity in parts of the body, most notably the hands. Here it eventually leads to fusion of the fingers and thumb, rendering the hand useless.
Does EB only affect the skin?Although EB mostly affects the skin, the internal linings of the body can also be affected; this includes the mucous membranes such as inside of the mouth, throat, anus, etc.
Is there a cure for EB?There is currently no cure for EB. Treatment for EB sufferers consists of wound and pain management to ensure the best quality of life.
What are the treatments for EB?Treatment involves daily blister and wound care and pain management. For more severe types of EB, iron infusions would be needed as well as surgeries to release fused digits and open up the esophagus.