Disease Awareness #3- Epidermolysis Bullosa (EB)

I have a feeling that you have not heard of Epidermolysis Bullosa or EB.  I know I did not until I met someone online, Silvia  who has a son with this awful disease.  He lives in pain daily.  Silvia is a great EB Advocate for her son & others, who live with this disease.  Her site is HERE.  I can not imagine having to wrap my child in bandages.  She has fought her insurance company more than than you know.  She also has wrote some books, too!

Silvia's books are:
1. Losing Alex
2. Living with Epidermolysis Bullosa
3. Special Mommy Chronicles

Awareness month for Epidermolysis Bullosa (EB) is The last week of October.  

Epidermolysis Bullosa is a rare genetic skin disorder. One thing to describe its rareness is that a doctor or a nurse can be working a lifetime and never bump into this condition. It is estimated that about 10,000 Americans, mostly kids, have some form of EB. With modern medical care, some with the worse kinds of EB can live into their thirties. Unfortunately, by this age most will succumb to a particularly aggressive skin cancer (Squamous Cell Carcinoma) that is somehow touched off by EB. 
{Information is from HERE}

There is 4 forms of EB.
1. EB Simplex (EBS)

2. Junctional EB (JEB)

3. Dystrophic EB (DEB)
4. Kindler Syndrome

Symptoms
Depending on the form of the condition, symptoms can include:

-Alopecia (hair loss)
-Blisters aound the eyes and nose
-Blisters in or around the mouth and throat, causing feeding problems or swallowing difficulty
-Blisters on the skin as a result of minor injury or temperature change
-Blistering that is present at birth
-Dental problems such as tooth decay
-Hoarse cry, cough, or other breathing problems
-Milia (tiny white bumps or pimples)
-Nail loss or deformed nails

{Information from HERE}

If you see a child wrapped in bandages from head to toe, think EB.  Think about how much pain that child is in.  Think about how much time goes into thinking about how your child feels.  Please do not stare at these children.  They are just like every other child, but they live with EB.  

Thanks for reading!
Melissa

If you think you have any symptoms of EB, remember I am not a doctor.  Please see your doctor.