December 18

To some people today is just an ordinary day; a week before Christmas.  But for us it's the anniversary of the last time we held our baby boy, Garrett James.  Today it's been 8 years since he took is last breath; 8 years since ours lives were changed forever; 8 years since our hearts were broken.  

In the past 8 years I have learned:

- that time does NOT heal all wounds

- who my true family and friends are

-hearing of the death of another child is incredibly heartbreaking (needless to say this week in particular has been vary hard to comprehend)



Even after 8 years I still remember:

-the exact words from the doctor that he was gone

-the conversations I had with friends and family when I called to tell them the news

-planning his funeral

-all the people who came to his funeral


And ever since that day 8 years ago I /we

- still celebrate his birthday every year

-still wonder what life would be like had he lived

-tear up when I hear/see an emergency vehicle with their lights/sirens on

In loving memory: 

Garrett James

December 6, 2004 ~ December 18, 2004

EB Awareness Week: Because of EB.....

Because of EB, I have a wonderful, thoughtful, pretty stubborn but independent, 10 yr old daughter

Because of EB, I have my own personal guardian angel

Because of EB, I have a loving, smart and giving 6 year old daughter

Because of EB, I have a happy, energetic, eager-to-learn almost 5 yr old daughter

And because of EB, I have a very hyper, always busy, happy, and not so little 19 month old son

Today is the final day of EB Awareness Week!  If you have read each of my post, thank you!  I hope you have learned something you didn't already know; I hope you still spread the word about EB!  Awareness is the key!

EB Awarenss Week: The sad part of my "job"

This post may be controversial to some people and it will revel my true feelings about certain things and that may cause some people to change they way they think about me.  I don't normally take that kind of risk or expose myself in this way, but I think sometimes people (even myself) realize I am human too and have my own thoughts an feelings on things even if I don't express them often.

While I TRULY enjoy my job, my responsibility, to help other EB Families, there are many days when that "job" is frustrating, sad and heartbreaking.

I wish I could save every EB baby that I come to know; I wish the term 'EB Angel' was a thing of the past.  I know I can't save everyone; but I often feel like I failed when one dies.  Don't worry, I know I truly didn't fail that family; that child.  But that is one of the frustrating parts; did I give the family enough info to make the best decisions they can?  The other frustrating part, NOT giving my opinion on certain aspects of EB care.  I use to be a 'my way is the only way' person but I have changed a lot in the past 10-15 yrs.  When I am speaking to an new EB Family I WANT to TELL then what to do.  But I have to keep reminding myself that I am just the provider of information; NOT the decision maker and its up to the parent to make the decisions on issues such as g-tubes, trachs, medications, etc...  and some days that is very frustrating for me.  But I haven't alienated too many people so I must be doing a good job of keeping my opinion out of it! 

Visual diagnoses by doctors is something else that also frustrates me.  To hear that a baby is born with super long fingernail and just a few blisters/patches of missing skin here and there and the doctors are quick to say, 'oh they are so mild, its simplex.'  So the parents go home relieved and happy only to have their hearts broken weeks later when the biopsy comes back as junctional-hertliz.

Or for the family who's child is more with massive skin loss and the doctors assume the child has junctional only to be completely shocked when the biopsy comes back as simplex.  

In my observation those who start out mild tend to have a severe/progressive form of EB and those that start out severe tend to have a milder form of EB that improves with age.  Granted it doesn't happen that way all of the time, but it seems to happen that way most of the time. 

And that is also something else I struggle with; not giving families my opinion on what type of EB I think their child has (unless they ask of course!) 

The sad and heartbreaking parts:

Of course learning of a new EB Angel is always heartbreaking, but for me knowing what the parents are thinking, feeling, and how they are suffering.   That is more heartbreaking for me.  I know what its like to lose a child; I know that the day after feels like; planning and attending the funeral of your OWN child; knowing what the first holiday, birthday and angel day will feel like without them.  I want to tell them it will get better; but that would be a lie.  It doesn't get better; it just gets easier to live with.  And I have over 100 friends/acquaintances that know exactly that; and the list continues to grow every year:/

I am so glad those 100+ people are in my life, but I wish it was because of a different reason.  And I know they feel the same way:)
 

Even though some days are sad, I will continue in my quest: to use my knowledge and experience of EB to make the journey of a new EB family a little easier to travel. 

EB Awarenss Week: The happy part of my "job"

I know there are people who consider me an EB advocate and I never really thought of myself as one until recently.  I don't go out in public to raise money or awareness for EB; I am more of a behind the scenes kinda person:)  I have my blogs; I run/co-run EB support groups on-line; I reach out to other EB families, especially those with new babies.  And I guess all that makes me an EB advocate in my own little way:)  

It wasn't until I got to college and was learned how to use the internet that I found  and "met" others with EB.  Then when I was twenty-one, I finally met someone else with EB in real life!  Since then I have meet dozens of others with EB in person and hundred of others on-line.  Because of EB, 520 of my 782 Facebook friends either have EB or have a family member or friend with EB!  

Because of EB (and the internet) I have made some wonderful life long friends! And most I have never met in real life!

  It was until after Garrett that I really became involved in the EB community.  It was after having Sami and then Garrett, I realized how little information there is out there about the day to day care of an EB baby.  The things like clothes, diapers, bottles, etc..  And if I (some who HAD EB) was having this much trouble, how were parents who didn't know about EB handling things??  My goal seemed simple at the time: to make the journey of another EB family a little easier to go thru my using my experience and knowledge; to give them the info and tools sooner rather than later in the process  (SO many families often find out way later on about the small things- reflux, certain bandages, ointments, etc..and had they known about those things from the beginning it would have made things easier) 

While my mission hadn't changed, it had gotten harder!  So many new families each year; so many types of EB, and each case is different- no one size fits all when it comes to EB!  Even though I am sure I do more than anyone expects, there are days I feel like I fail.  It's hard to balance my own responsibilities (home, kids, work, etc...) with my strong desire to help other EB families.  I wish I could do it full time (i'd even do it for free!)  but like everyone else, I have my own kids and a job and a husband and a house and cats to care for and there are only so many hours in the day!  People joke I should have my own "office hours" and while I did think about it for a short time, I realized EB doesn't have "office hours"!  Families often have questions on night and weekends and I do not mind getting an email or text in the evening or on the weekend.  99% of the time if someone had a question or needs advice.  After all, they need (are hoping for) an answer sooner rather than later.  

My goal remains the same each day: to help, listen, advice, and suggest when I can and hope I make a small difference in the lives of others....

Stay tuned for part two....it will be posted later today:)

 

 

EB Awareness Week: "how do I know so much about EB?'

"how do I know so much about EB?'  That is one questions I get asked a lot.  People assume I know a lot about the form of EB that we deal with but they are always surprised to find out  how much I know about many of the other forms as well.

Just where do I get all my info?  Well, many places actually:-)


In addition to having EB myself and caring for children with EB, I read a lot of journal articles about EB, look for info on line, but most importantly, I listen.  Or in the case of the internet and email, I read.  I read questions people post about EB and the answers they receive.  I read the stories of others with EB that they are willing to share with the EB community; the good and the bad.  I take A LOT of notes.  I notice and remember (and record) the things about EB that the majority of doctors and EB medical professionals don't focus on or write articles on.  Things like bleeding and raw finger nails, bad wounds on the ears and the back of the head are typical signs of the severe form of Junctional EB.  Or that honey or golden fluid in blisters is very, very common in simplex.  I know that groups of blisters is an indication of the dowling meara form of simplex or that webbing occurs more often in recessive dystrophic EB than in any other form.  Or that airway issues can happen in all forms of EB. 

I make notes of the ages when those with airway issues get a trach (or need one).  I am trying to learn more about the trachs and the process of getting one so I am better able to give information for the new family I reach out to if they reach that point in their EB journey.

I learned about g-tubes and how they work/how to care for it WAY before Joey got his g-tube just from by talking to other EB families that have a child with a g-tube.

I takes notes about what are the best wound care products or ointments to use on which takes of wounds.  

I signed up for "Google" alerts for the key word "epidermolysis bullosa".  So anytime  something published on-line with 'epidermolysis bullosa" ANYWHERE in the article I will get an email with the link to the article, web page, etc....I get links to medical journal articles; news paper articles, web pages of those with EB, blogs posts (even my own sometimes!) and even obituary notices for those with EB who has passed on.  Many of the links aren't very useful or informative but I always check them out to see if its anything important.  

I read the blogs of those who have/are going thru the Bone Marrow/Stem Cell transplant at the University of Minnesota.  It allows be to learn more about the bone marrow/stem cell transplant process and all the good and bad that comes with it.  

So there my friends is where I get all my information and knowledge from:)  While I do know a lot about EB, I don't know everything about EB; but I do enjoying helping other EB families so I will keep expanding my knowledge to be able to help families even more!

EB Awareness Week: EB Statistics

EB Statistics

*In the US, 1 out of 50, 000 babies are born with EB.  Worldwide that number drops to 1 out of 17,000.

*Approximately 1/3 of those babies will not live to see their first birthday.  

*Depending on which study you read, 1 out of every 227-352 people are carries of an EB gene (I am pretty sure this includes people who have EB)

*Simplex is the most common form of EB

**********************************************************

Here are some specific statistics about EB here in the US (I was not able to locate worldwide 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:                                                                                        Incidence**

EB (All types and subtypes, including unclassified patients)                              19.60

EBS                                                                                                               10.75
EBS, Localized (formerly Weber- Cockayne)                                                  6.81
EBS, all others                                                                                                3.95

JEB                                                                                                                 2.40
JEB-Herlitz                                                                                                      0.41 
JEB, other                                                                                                       2.04

DDEB                                                                                                             2.86

RDEB                                                                                                             2.04
RDEB, severe generalized (formerly Hallopeau- Siemens)                                0.41

RDEB, all others                                                                                              1.63



So in plain English! There are approximately 4 million babies born in the US each yr. So take the #'s in the Incidence column and multiple by 4 to get the total # of each case of EB for that form:

Total # 19.6x4 = 78.4

EBS- 10.75x4 = 43
JEB- 2.40x4 = 9.6
DDEB- 2.86x4 = 11.44
RDEB- 2.04x4 = 8.16


so of the approximate 78 EB babies born in the US each year, 43 will have some form of simplex, 9-10 will have some form of Junctional, 11-12 will have a form of DDEB and 8-9 will have a form of RDEB.


You can break it down by subtype if you want.


**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.

EB Awareness Week: John Hudson

EB Awareness Week- An EB Advocate

The dictionary defines the term Advocate as:

ad·vo·cate

   [v. ad-vuh-keyt; n. ad-vuh-kit, -keyt] Show IPA verb, ad·vo·cat·ed, ad·vo·cat·ing, noun

verb (used with object)

1. to speak or write in favor of; support or urge by argument; recommend publicly: He advocated higher salaries for teachers.

noun

2. a person who speaks or writes in support or defense of a person, cause, etc. (usually followed by of ): an advocate of peace.

3. a person who pleads for or in behalf of another; intercessor.

4. a person who pleads the cause of another in a court of law.

An EB Advocate would be someone who support a someone with EB or advocates for EB awareness (among other things).  There are many EB advocates within the EB community; many wonderful people who have NO personal connections to EB but felt drawn to the cause and have taken it on full force! 
 

One person I want to tell you about today is my friend Christie Zink.  Christie first leaned of EB a little over a year ago when she came upon the blog of Tripp Roth.   Since then she has make EB Awareness her main cause!  On her blog, This Little Light, she tells the stories of those with EB.  She is the founded of  'I Refuse' a movement to get others involved in EB.  Check out the EB Shop and get your EB Awareness merchandise before its gone!  It has taken off like wildfire!!!  She has also been nominated for 'Yahoo's Women of Shine!  Please go vote for Christie!!!   The grand prize is $10,000 and if she wins she will donate the money to EB research!!  So please go vote!  Voting ends on Tuesday (10/30)

So GO VOTE!!!

Christie is just one of the MANY EB Advocates out there!  I wish I had time to post about them all but it would take WAY longer than a week!  So to all the EB Adovcates out there, THANK YOU for all that you do for those with EB!!

  

EB Awareness Week: EB Book

This book was published in 2009 and I had no idea it was available on-line, until tonight!  

It is VERY long and very technically but has A LOT of great info on EB; all types and all complications and everything associated with each type!

Check it out!

Life With EB

EB Awareness Week: The History

Per the DebRA web site: "National Epidermolysis Bullosa (EB) Awareness Week, is a time to increase awareness of EB, to promote the need for a cure and to spur advocacy on behalf of families suffering with the emotional, financial and physical burden of the disease."



EB Awareness Week was first established in 1984 by President Ronald Reagan!  You can read the Proclamation here.  It was later decided to hold EB Awareness Week the last week of October each year.

There is no right or wrong thing to do during this week.  So people plans HUGE events within their community.  Some pass around info at work, school or within their community about EB.  Some (like me) post various blogs to educate and promote awareness about EB.  It doesn't matter what you do, just do something! 

EB Awareness Week

October 25-31, 2012 is National Epidermolysis 

Bullosa Awareness Week!

My hope is to do a blog post each day about something EB related!  I have many ideas; just hoping I can find the time! 

Part Five: EB in our family

The purpose of this post is to give the family, friends and followers of baby Easton an idea of what life is like with severe EB Simplex.  My family and I have EB Simplex Dowling Meara; it is one of the most severest forms of EB Simplex.  You can read about my early life living with EB here.  But despite having EB I think I lived a mostly 'normal' life.  I went to a regular school, had friends, rode a bike; in middle and high school I played tennis and was in the marching band.  Sure I still got blisters, but I didn't care.  It was more important to me to do those things and be like a normal kid that it was not to get blisters.  I graduated from high school with honors and went onto collage.  I got a degree in legal studies.  I have been married for almost 12 yrs and have 6 children (4 on earth and 2 in Heaven).  I am a stay at home mom during the day and work part time for a major retail chain evenings and weekends.  So yes I am VERY busy!

My oldest child was born in late summer 2002.  We named her Samantha and she was born with EB too. She was missing skin on her ankles, top of her feet and wrists.  At the time she seemed very severe.    She spent 13 days in the NICU before we were allowed to bring her home.  Only to end back up there a week later due to an infection.  We battled infections for the first two months on and off.  Her skin conditioned to get worse as she got older and by the time she was 4 months old she was missing skin on about 75% of her body.  Here she is at age 5 months (we didn't own a digital camera at the time and borrowed one from a family member when possible so I don't have many digital pictures of her from early on)

Her skin gradually got better as she got older.  But having EB did cause her some delays.  She crawled at 13 months; pulled up around 17 months; walked around 19 months.  Her skin was noticable better by age 12 months, even better by age 18 months and by age 2 we only had to wrap her torso.

Sami at age 2

Today Sami is 10 and in the 5th grade.  She attends a regular school, has MANY friends, is on the A/B honor roll and is involved in MANY activities! She also learned how to ride a 2-wheel bike recently!  She still gets blisters now and then but overall her EB is doing very well.  (she has other health issues that are more troublesome than her EB is at this point.)

 

Then in December of 2004, we had our second child, Garrett.  He too had EB and was MUCH more severe than Sami was at birth.  Sadly he developed MANY complications, one of which was a blood infection along with blistering in his upper airway.  His infection was not diagnosed in time and sadly Garrett passed away 1 week before Christmas in 2004.  He was 12 days old.  You can read about his whole story here.

We assumed Garrett's complications were just a fluke thing and NEVER expected it to be common among others with EB Simplex. (we later learned about 5% of those with EBS-DM have massive internal issues as well)  Then in March 2011, we had another baby boy, Joey.  He too was born with EB and he was even severer than Garrett was.  Joey was missing skin from his knees down on both legs, ankles, some on his hands and even had some blisters.  (Sami and Garrett were not born with blisters).  Joey did very well after birth and was able to go home with me!  He was a good eater and healing well.  But at ten days of age he too started having airway issues:(  He went into respiratory failure on March 18th.  He spent 7 days on a ventilator.  His airway was scoped only to find minor blisters and some inflammation likely caused by severe acid reflux.   We also learned that he was aspirating every time he swallowed which likely contributed to the issues as well.  A feeding tube was surgically placed in his stomach and that was how he was feed for 4 months until everything healed and it was safe to eat my mouth again.  

Here is Joey at birth

Joey around 4 months old

Joey's skin got worse before it started to get better. You can read a blog post I did after he was born called,  'there is nothing simple about simplex'  

Joey is now 18 months old.  He started to crawl around 12 months and walked around 14 months.  He battles infection frequently but none severe enough to need IV meds.  He still has his g-tube and we use it mostly for meds and on days he doesn't eat enough (like today) He gets colds frequently and does cause some EB related upper airway issues.  We are able to mange them at home using breathing treatments, oral steroids and a machine to monitor is o2 levels and heart rate.  Though his skin is better today than it was at birth,  it is no where near where Sami's was at this age.  I still spend one hour a day cleaning  his wounds and redressing his entire body in bandages. I hope he will get to the point where he will no longer need bandages some day but for now we do what we have to do!  

Here are some recent pictures of Joey 

He is a happy toddler who enjoys eating graham crackers; yogurt; candy and cheese.  He loves to play with this big sisters and playing outside.  He is also a  BIG fan of spongebob squarepants:)  

*disclaimer: The purpose of this post is to share how EB Simplex affect our family.  Everyone with EB is different.  At the time of publication the type of simplex Easton has is unknown.  NO ONE knows how his EB will be next week, next month or even next year.  I just wanted to give his family, friends and followers a brief glimpse of the life of another EB simplex family.  There are many out there; we are just one of them.  Not all EB simplex is this severe but many cases can be.   I also have two other children with do NOT have EB.  With most forms of EB Simplex the chances are 50% with each pregnancy. MY EB was caused by a spontaneous mutation that occured when my mom got pregnant with me.  Neither of my parents (or siblings) have EB.  One can get EB Simplex because one parent has it or it can be caused by a spontaneous mutation that occurs at conception.  There is NOTHING that causes the mutation to occur, it just does. 

I ask that you NOT judge me for choosing to have children. I knew the risks and for me it was worth it.  I do not think my life with any worse off because I was born with EB.  Nor do I think my children's lives are any worse off either.  Because of EB I am able to share my story, the story of my children and am able to offer support and guidance to other EB families.  If you chose to leave a comment I ask that it be kind and positive.  Easton's family needs all the positive support they can get.  Any negative or hurtful comments will be deleted.  

If you wish to visit our family's blog, you can find it here: Four Busy Bees and Two Little Butterflies

You can learn more about EB Simplex and the possible complications here 

Thank you for taking the time to read this!  I hope you have a better understanding about EB Simplex.  

Part Four: EB Simplex Dolwing Meara

EB Simplex Dowling Meara is the form of EB that my family and I have.  I wanted to do two post on EBS-DM, one about the medical aspect of it and another one on how EBS-DM affects my family.  

The following information was obtained from the DebRA website and from the Electronic Textbook of Dermatology.  

EB Simplex- Dowling-Meara variant (Herpetiformis) 
 
INHERITANCE: Autosomal Dominant and can occur due to a spontaneous mutation too

Common Manifestations:

• blisters and erosions present at birth or arising shortly thereafter
• acral sites (arms/hands, legs/feet) most often affected, but generalized pattern may also occur
• milia may be present at healed sites
• focal atrophy sometimes present, scarring is rare, except at sites of congenital (those present at birth) lesions
• Blisters
• Keratoderma - Thickened skin on palms of hands and soles of feet. Confluent keratoderma in EBS-DM.
• Nail dystrophy - The presence of rough, thickened or absent finger or toenails.
• Problems with the soft tissue inside the mouth
• often there is improvement at puberty especially with nail dystrophy

Less Common Manifestations:

• Anemia - A reduced amount of red blood cells, volume of red blood cells, amount of hemoglobin. Hemoglobin is the oxygen carrying portion of the red blood cell. The heme aspect of hemoglobin, is the iron compound that makes up the pigment part of the hemoglobin molecule. Anemia is more common in the severely affected individual.
• Growth retardation. This is more common in a severely affected individual.
• Gastrointestinal tract - Involvement of the GI tract may include blisters in mouth, esophagus and/or anal margins.
• esophageal involvement occurs including expectoration (throwing up) of esophageal casts (lining of the throat)
• mild flexure contractions may occur
• occasional dental abnormalities including natal teeth (teeth present at birth), anodontia

Rare Manifestations of EBS:

• Granulation tissue - The appearance of red fleshy tissue which is capillary formation during tissue healing This would be a rare occurrence in a person affected with EBS. This is more commonly seen in a person severely affected with Junctional EB.
• Dental caries (cavities) - This is more common in people affected with RDEB or JEB however, if mouth care is not performed regularly it will increase chances of cavities.
• Ocular (eye) involvement is more commonly seen in people with RDEB or JEB however, it has been reported in some forms of EBS.
• Pseudosyndactyly - Fusion of fingers and/or toes. This manifestation is more commonly seen in RDEB. In rare instances it has been reported in EBS-DM.
• Enamel hypoplasia - Underdeveloped enamel upon the teeth. This is more prevalent in patients with JEB.
• Respiratory tract involvement. Rare occurrences have been noted in the more severely affected individual.
• Genitourinary tract involvement. Rare occurrences involving the GU tract have been reported in some forms of EBS.

A new series...

I have a HUGE goal of doing a new up-to-date series on EB topics.  Not exactly sure how often I will get time but my goal is one post a week!!!

So far I done three parts:

Part One: Top 10 things new EB parents need to know starting on day 1!

Part Two: If a family member or friend has a child with EB

Part Three:  Bath and Dressing Changes

I know this will be so beneficial for new EB families so that will be my motivation to write at least one post per week!  I have no idea how long the series will be, I guess when I run out of topics!  

Part Three: Bath and Dressing Changes

I have been wanting to do a post (with pictures) on how we do dressing changes to give other EB families ideas for their own set up.

  here is the area as a whole

gauze opened and tubifast pre-cut to size (keeps the gauze in place)

 lancets to pop the blisters:(

 ointment we use on his wounds

twice a month I spend time prepping 15 days worth of bandages. It saves SO much time each day.  It takes me about 6-7 hours to open the packages cut the pieces, wash/dry/cut the Tubifast, and sort them into 15 sets of bandages.  I store them in gallon size Ziploc bags to keep them safe and dry.  It's also handy to have them ready to go in case he is admitted to the hospital or we have to leave quickly for some reason.  Just grab the bags and go!

For those wondering how much we use each month: Right now we use 2 pieces of 6x8 transfer, 1/2 of a 8x20 transfer, 1/4 of an 8x20 lite, 1/2 of 8x8 mepilex, 1 6x6 mepilex, 1 6x6 lite, 1/4 of the restore lite foam, about 1-2 sheets of the 6x8 restore contact layer or mepitel, 3 ABD pads for protection only, green, blue, and yellow tiufast, 2 rolls of 4" gauze, 2 rolls of 3" gauze, and 1 roll of 2" gauze PER DAY so when you times it by 30 days it comes out to  A LOT of bandages.

these are pictures of where we keep SOME of his supplies.  It is the items we use daily, the rest are stored in the dinning room 

Bath Time:

For his bath time he is big enough to sit in the regular bath tub on a soft towel.  I fill the tub with water up to his waist.  Depend on how is skin looks I either add Vinegar, Chamomile Tea, baking soda or just regular baby bubble (he LOVES bubbles).  I left him soak (with his bandages still on) for along as he wants too.  Then I rinse him with a separate container of whatever is in his bath water so I don't spread the bacteria already in his bath water onto the rest of his body.  If he was sitting in bubbles or baking soda I just rinse with clean water.  Then I move him to the bandage table and change one limb at a time.  5 days a week I change his bandages by myself; and he itches SO much when his bandages are off that I can only change one limb at a time so he doesn't itch himself raw.  I remove the old bandages.  Pat dry with a towel or dry on low heat with a hair dryer (damp skin can breads bacteria and fungus).  Then I apply any ointments I think he needs (it varies from day to day depending on how his skin looks).  Then I re-wrap his limbs and torso. Most days he drinks his milk or has a piece of candy or plays with toys and corporates for the most part.  But there are some days he screams and thrashes around the ENTIRE time:(   Those days are not fun.    He is what he looks like all wrapped up!

That is how we do bath and bandage changes here.  Everyone has their own way of doing things and it all depends on the age and severity of their child.  It does take awhile to find what works best for everyone but I wanted to give some examples to help other families figure out what might work for them!  






*disclaimer-I am not a medical professional. I have lived with EB myself for 35 years and have been an EB mom for 10 years.  These are things I have learned along the way and as well as input from other EB parents.