Garrett's House is dedicated to the support, advice, and education of a genetic skin condition called Epidermolysis Bullosa or EB for short. Currently there is no cure or effective treatment for EB. Please take a moment to learn about EB, and how you can support others who struggle with EB everyday. Garrett's House also honors the memory of those who lost their brave fight against EB. Please check out the Garden of Angel to learn more about the precious butterfly angels.

January 14, 2021

Infections and EB Due to constantly having open wounds, those with EB are highly susceptible to getting an infection.


There are 5 main types of infection those with EB get:

Staph
Strep
Pseudomonas
MRSA - (Methicillin-resistant Staphylococcus Aureus)
Yeast

(there are also dozens of other bacterial infection that one can contract, but these seem to be most common among EB) signs of an infection

~ red or swollen wound, sometimes it will feel hot

~foul odor

~excessive drainage, more than usual.

(Greenish-blue drainage can indicate a pseudomonas infection. While cloudy or yellowish drainage can indicate a step or staph infection. )

~a fever 

Only a wound culture performed by a doctor can tell you what type of bacteria is causing the infection. 

Typically skin infections are treated with topical antibiotics, such as Polysporin or Bacitracin. Sometimes a prescription strength topical antibiotic such as Bactroban is necessary. Only use Bactroban as prescribed. Over use of it can cause your body to become resistant to it and it will no longer work when you really need it too. The same with oral antibiotics. Use those only when necessary so that your body doesn't become resistant to those as well. 

In addition to topical and oral antibiotics, there are other home remedies that you can do to help eliminate the bacteria. 

For Pseudomonas Infection, you will want to use an acetic solution and the most common thing to use is Vinegar. 

The acetic acid formula is:

Mix 1 ounce of 5% vinegar in 19 ounces water.

Vinegar baths or compress can be used on any age. Just make sure you rinse well with clear, clean water after a Vinegar bath, otherwise excess itching and irritation may occur. 

For a Staph or Strep related infection, (including MRSA) you can take bleach bath or apply bleach compresses to the infection area to help kill the bacteria.


Bleach Bath Formula for Adults and Children OVER the age of 1:

Mix 1 teaspoon bleach in 1 gallon water.

For Children and Infants UNDER the age of 1, 

Mix 1/2 teaspoon bleach or less to 1 gallon of water.


No matter what age, make sure you rinse well with clear, clean water after a bleach bath, otherwise excessive itching and irritation may occur. I have heard that many with EB take bleach or vinegar baths daily to help keep infections at bay. And found them to be very effective.


NEVER mix Vinegar and Bleach together in the same bath. A chemical reaction can occur and produce a toxic fume causing respiratory issues.  In addition, adding other agents such as soap, salt, or bubble bath can alter the PH levels of the bleach (or vinegar) solution making it less effective against the bacteria.  It's also important to mix the correct amount of water and bleach (or vinegar) together.  Too much water can dilute the bleach (or vinegar) making it less effective while too much bleach (or vinegar) can cause stinging upon contact with the open wounds

Unfortunately, infections tend to be apart of having EB. Prevention in the best thing, and to recognize an infection quickly so that prompt treatment can begin.


Suggestions for the entire family when dealing with EB and recurrent infections. 

-swab all family members noses with prescription bactraban to help stop the spread between family members.  Most people carry the staph bacteria on their skin and in their nose and don't even know it. It usually doesn't cause a problem until it gets into an open wound.

- NEVER share towels, blankets, sheets, etc...

-wash bed liens in hot water daily of the person with an active infection

-wash your hand A LOT

-for children in school, once they get home from school/day care have them wash their hands and change their clothes. You wouldn't believe the kind of bacteria and germs that can come home from school

-change your clothes and wash your hands after you return home from work or a doctors appointment.

-if possible do the same for the person in the family with EB after returning from the doctors or hospital.

-disinfect toys of small children frequently to prevent the spread of bacteria.



 Other Tips on Infections:

*if dealing with MRSA, there is a product you can get from your doctor to add to the bath water (and when washing clothing) called chlorhexidine (Hibiclens)to help fight the infection. 

*Medical Grade Honey and products with Silver in them also help fight many bacterial infections.   It is always best to check with your doctor before trying something new as some over the counter products can interfere with prescription medical (either oral or topical) 
 
 
 
©Garrett's House 2021

EB Statistics

 

EB Statistics

The incidence column is the one that estimates number born in a given year. The last official birthrate numbers are form 2009, and that year it was 4,130,665 (2010 and 2011 are not available)


Material is based on the NEBR study population 


EB type or subtype: Prevalence* Incidence**








EB (All types and subtypes, including unclassified patients) 8.22 19.60
EBS 4.60 10.75
EBS, Localized (formerly Weber- Cockayne) 3.14 6.81
EBS, all others 1.46 3.95
JEB 0.44 2.40
JEB-Herlitz 0.07 <0.41
JEB, other 0.37 <2.04
DDEB 0.99 2.86
RDEB 0.92 2.04
RDEB, severe generalized (formerly Hallopeau- Siemens) 0.42 0.41
RDEB, all others 0.49 1.63
*Prevalence of EB patients per one million births (1990)
**Incidence of EB births per one million live births (1986-1990)
Fine, Jo-David and Hintner, Helmut. (2008) "Life with Epidermolysis Bullosa (EB): Etilogy, Diagnosis, Multidisciplinary Care and Therapy" Springer-Verlag/Wien, New York. 



The number in the Incidence Column is per 1 million births so to find the actual number of new cases of EB each year in the US, multiple that number by 4.13 (the approximate total number of births in the US each year)


So there is approximately 80 new cases of EB in the US each year.  Of those 80- 

45 will have some form of EB Simplex

10 will have some form of Junctional

12 will have Dominant Dystrophic EB

10 will have Recessive Dystrophic EB

This is just an approximate # and some years there will be more or less in each category. 





©Garrett's House 2021