What is Epidermolysis Bullosa?

Our Mission: We ignite the movement that empowers parents to protect children from harmful chemicals. Donate »

Blog

Ask Us!

Monday, January 09, 2012

Editor's Note: Healthy Child Healthy World is thrilled to announce our selection of our first Mom on a Mission Finalist for 2012 – Andrea Pett-Joseph! Andrea is committed to bringing awareness and finding a cure for Epidermolysis Bullosa or EB, a rare, painful and life threatening genetic disorder of the skin that has affected her eight-year old son from birth.

by Andrea Pett-Joseph

EB. Those two little letters changed my world forever. After nine months of pregnancy bliss, no epidural, and five hours of labor, it all changed in a blink.

Eight years ago our son, Brandon, was born with a rare, genetic disorder called Epidermolysis Bullosa, or EB. This is a painful and life threatening disorder where the skin is missing a protein and does not bind to itself, causing tearing and blistering at a slight touch. All parts of the body, including esophagus, eyes and internal organs are affected; Nutrition is closely monitored to ensure proper physical growth and function; his body is bandaged daily to protect against infection, so. Skin cancers and webbing of the fingers and toes are often associated with the disease as well.

My son has no nails.

As a first-time mom, I was prepared for new challenges, but nothing could have prepared me for this. My husband and I were sent home from the ICU with instructions to bathe my son in bleach, pop his blisters with a needle and wrap him in petroleum-covered bandages.

I am a vegetarian and eco-conscious person who practices a natural lifestyle, takes our pets to a holistic vet, shuns chemicals in the house and garden and buys organic as much as possible.

The idea of bathing our son in bleach was simply not an option. Armed with this determination, I set out to find alternative solutions and provide him with the best possible natural healthcare we could find.

Today, we visit a naturopathic nutritionist who recommends supplements such as quercitin, dermacare with vitamins for his skin cells, iron for blood loss due to constant wound healing, digestive enzymes to keep his lining healthy, and immune boosters to keep infections at bay. Our arsenal of skin care products includes natural creams made with bee pollen and propolis, milk and oatmeal baths sachets, tea tree oil, and homeopathic pain relievers, among other things. We are now experimenting with a gluten-free and dairy-free diet to maintain a healthy gut and digestive system.

After only a few months of living in this new reality we asked ourselves, "What do we do?” And the answer was easy: Do something to find a cure for EB.

Along with my husband, Paul, I opened the Los Angeles office of the Epidermolysis Bullosa Medical Research Foundation and quickly began enlisting friends and supporters to join our cause. We've held numerous events, joined with celebrity supporters for fundraising projects, and turned the spotlight on EB by appearing on “Oprah” and getting features in magazines. We have raised nearly $4 million for research, currently fund three major university studies, and helped many EB families with basic needs such as wheelchairs, specialized beds, bandages and other medical necessities that insurance will not cover. We’ve also helped introduce EB families to natural healing creams for their children’s wounds.

All this, while still working full-time!

This is more than a life challenge. This is an affirmation of the fragility of life and the strength of a mother’s determination; a reminder to not take anything for granted.

Although Brandon’s skin may be fragile, he has strength of character; although his body may hurt, his spirit is joyful. It is my mission to help him and others who suffer from EB live a pain-free, healthy and long life.

------------------------------------------------------

Nominations are open to find eight extraordinary parents working within their communities to create healthier, happier environments for children and families. From January through August, we will select and honor a finalist each month who will enter the running to become our 2012 Mom on a Mission. Will any of them be a mom in your life? Nominate her today! Submissions are open on a rolling basis.

Posted by Cathy Pagendarm on 02/01/2012 at 08:21 PM

Andrea, You need to check out Shaklee products. I know this sounds like a sales talk but it’s not! Shaklee products, nutritional supplements are free from most synthetic chemicals including herbicides and pesticides among a lot of other things out there. I’ve read where 80% of supplements come from China and aren’t manufactured here in USA. This is very important, including the supplements that the doctors hand out. Our bodies are nature and nature reacts to nature, very well, nature does not react to synthetic chemicals very well at all. EB could be a reaction to synthetic chemicals of all kinds. There are over 80,000 chemicals and only 500 have been tested. Scouring cleaners have over 100 chemicals in them. Husband is a chemical engineer. People say they are allergic to foods but in some cases, they are allergic to the chemicals on the food and in the foods. Apples are sprayed 21 to 25 times in one growing season. Grapes - 25-45 times and all are different chemicals most of the time. Shaklee does a lot of testing on their products and they also contract to organic farmers for specific growing instructions and then they test it anyways when they bring it to the Shaklee door. Test again through process of products and then test again before it goes into packaging. They are the only ones that test so much and they have over 90 Peer Review Clinical Studies in Medical & Scientific Journals. The highest you can get along with a “Landmarkstudy.com” that states our vitamins out perform any and all other vitamins on the shelves out there. Take a look at it and you’ll see what I mean, and No the study was not done in house like a lot of them are. It was done by UC Berkley School of Medicine and it went public and could have ruined our CEO’s, Shaklee company. Roger Barnett saw that when he bought the company, at the Shaklee conferences there were more 50,60,70,80,90 and 100 year old people in great shape and full of energy and not hopping along on canes etc. He knew he had something with all the research he did on this company with his own 20 million dollars. He was out to buy the BEST company in the world that could make a difference in the world and I think he found it from what I can see. People with illnesses come to us all the time and seem to be healthier than the first step in our doors. So, you see, I’m a Mom of 3 boys and always have made them my first priority, their safety and health are on the top of that list. I hope this helps you a lot. Getting synthetic chemicals out of his food, cleaners, lotions & creams, water and feeding the body’s immune system with the right nutritional, nature stuff will let the body heal it self in it’s own way. Did you know that you have a new heart every 30 days at the cellular level, all human cells replace themselves but they need the “RiGHT” nutrition to do it. Shaklee has been around for 56 years and they aren’t a fad or just came around 5 years ago. Shaklee also has 75 scientists that work with the human body for the last 56 years and knows it in and out, more than other people do for the nutritional aspect. NASA & Jacques Cousteau uses Shaklee products and nutrition and came to Shaklee because of the studies. Who wants an astronaut in space sick and not at his optimum level of nutrition? Ask your self that. www.shaklee.com can help you do some research on this company. Check out the news and press releases and events that Shaklee does, along with all the environmental projects they still do. Shaklee in year 2000 was the First Climate Neutral Certified company in the “WORLD’ that off set all of their carbon emissions to a net zero and still doing it today. I’ll leave you with that and I do hope this helps your son. This is from one Mom to another Mom. What if this helps? Please let me know how you do and how your son is. My prayers are with you all. Good Luck! Cathy Pagendarm

Posted by Zeena on 01/13/2012 at 02:36 PM

What a great story and I hope that you can help find a cure. I have just recently learned of this disorder when I started reading this mom’s blog about her son who suffers from EB http://randycourtneytripproth.blogspot.com/. Unfortunately, her son has not been that lucky. My son was a preemie and in the hospital for 5 months, although he does not suffer from EB, just the other medical issues he had made me want to ensure that I do everything I can for him to give him a healthy and safe environment to grow in.

Please keep doing what you are doing as this seems to be such a painful disorder and I can only imagine how hard it must be for both the child suffering from this and the parents.

Posted by Lisa on 01/13/2012 at 02:35 PM

Wow! God Bless you for being determined to find a better way- bleach!? That makes me cringe. You are a blessed family to have each other. Brandon sounds like he takes after mom- awesome!
:)

Posted by Stefanie on 01/09/2012 at 09:01 PM

You and your husband are AMAZING! I concur with your sister-in-law…you are my hero too! I wish you and your family many happy, healthy, pain-free days!

Posted by amy on 01/09/2012 at 09:42 AM

wow you are one strong, determined mother. Your son is lucky to have you!

Posted by Dennise Joseph on 01/09/2012 at 09:25 AM

Andrea is my sister-in-law but most important, she is my hero. My nephew Brandon is on of the most self confident children I have ever known. Nothing stops this family from living life to its fullest each and every day. I believe we will find a cure for EB someday.

More comments: