Epidermolysis Bullosa

You can ask why we choose the DEBRA Charity to help donation through our online selling. 
The answer is so simple. Our one of our son has EB.
He has a mild one, really mild one but it was one of my worst day when the dermatologist said, "he had EB", he was 18 months old with full of energy. We realised blisters after blisters on his knees. All doctors said, "its all right, he probably fells too much". Finally we found the EB team, and they gave us so much help.  I have never heard about it until that time as most of us. So I went home and took some researches. I realised that no treatment for these patients, they can get help to reduce the pain but no life changing solution at this time. This illness start generally with your born! So not just adults are suffering and are in pain but new born babies and children. 
For us it was not a question to support this charity through our online selling to help finding more fund to the DEBRA Charity, who takes care everyone from new born babies. Honestly not just because our son is effected as he is extremely lucky and his illness is really mild but as we have seen many children whose daily life is not easy and they are in pain day by day. 
If you have time, here are some information what it is, what they are doing and maybe you find other way to help also.
There is always a way to help. 
If you have a few minutes read this short summary what you can find on Debra Charity website also. 
All the information used below is from the Debra Charity website. 
https://www.debra.org.uk/
Epidermolysis Bullosa (EB) is the name for a group of painful genetic skin conditions that cause the skin to become very fragile and tear or blister at the slightest touch.

The name comes from ‘epiderm’ - the outer layer of skin, ‘lysis’ - the breakdown of cells and ‘bullosa’ - blisters.

There are many different types of EB, all classified under four main types ranging from the mildest, in which only the hands and feet are affected, to the most severe, which can have a devastating effect on any part of the body causing lifelong disability and pain. In severe cases EB can sadly be fatal.

EB is not contagious and cannot be passed on through contact.

How do people get EB?  

EB is inherited through a faulty gene (gene mutation), which means the skin cannot bind together, so any trauma or friction can cause painful blisters, which result in open wounds and scarring. It can also affect internal linings and organs.

EB can be dominant or recessive depending on whether one or both genes in a pair are faulty.

The faulty gene(s) and missing protein can occur at different layers in the skin, which is what dictates the type of EB. 

Symptoms of EB 

Symptoms can be varied and can be mild to severe depending on the type of EB. Common symptoms are:

  • the slightest touch can cause painful tearing and blistering of the skin 
  • the healing of the blisters can cause pain, severe itching and scarring
  • in mild forms of EB, blistering may mainly occur on the hands and feet causing problems with walking and other daily activities
  • widespread blistering in more severe cases can make the skin vulnerable to infections and extensive scarring can occur
  • in severe cases the blistering can occur all over the body and even on internal organs. It can also mean a higher risk of developing skin cancer
  • the main challenge people with EB face on a daily basis is the pain and itching that occurs as a result of the blistering.  

How is EB diagnosed? 

Laboratory diagnosis is essential to identify and locate the faulty gene, which will determine the type of EB. Skin sample analysis can be done initially and is often the first step with newborn babies. Prenatal testing is also possible.  

 

How is EB treated? 

There is currently no known cure for EB but there are treatments aimed at helping alleviate some of the debilitating symptoms. At DEBRA UK, our work is focused on funding research to find new treatments and a cure, as well as providing support to people living with EB to enhance their quality of life through improved healthcare, access to information and respite care. Find out more about treatment options, how we support the EB community and the research projects we are funding.  

 

You can help directly to the DEBRA charity with Donating your items 

DEBRA Broughty Ferry

Please call your local shop and arrange to drop off your donations in the designated drop off area in-store. This may differ from store to store. Please do not leave any donations outside the front of our stores when we are closed as items left this way may be damaged and not fit for re-sale.

 

OR just visit the link below and donate as much as you can afford. All these peoples will be so so pleased with your help. 

 

https://www.debra.org.uk/donate/donate-online

 

Thanks for reading this part of our website!

Sonja