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 1, 2021

Survey Results

In the fall of 2008 I started a survey among those with EB or who had children with EB to get an idea of when kids with EB, walked, crawled, and other milestone that all kids experience. I kept adding data as people were willing to share. As of March 2009, apx 75 patients participated in the survey. Here are the results.



The average age for EB as a whole:

Rolled over: 6-7months

Sat unassisted: 7-8 months

Crawled: 11 months

Pulled to a standing position: 13-14 months

Walked: 23-24 months

Got 1st tooth: 8 1/2 months

Began sleeping through the night on a regular bases: 18-19 months

Length of hospital stay after birth: 28.1 days

Received some type of therapy (OT, PT, speech,feeding): 51% of those survey did

Found it to be helpful: of those 51%, 28% found therapy to be helpful

Suffer from reflux: 69% yes; 31% no

Are lactose intolerant: 18% yes; 72% no

Have/had a G-tube: 32% yes; 68% no

Age they received a g-tube: 20.4 months

Issues with constipation: 59% - yes; 41% no
 
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I re-did the survey in 2020 and these were the results: 


EB Development Survey Results:
 
63 total participants
 
42 have EBS
9 have RDEB
9 have DDEB
2 have JEB
1 has an unknown form of EB
 
Reflux:
60% no
40% yes
 
Gtube:
90% no
10% yes
 
Constipation:
46% no
54% yes
 
Received OT, PT or other therapy:
47% no
52% yes
 
Of the 52%
Did you find it beneficial?
57% yes
25% no
19% maybe
 
Lactose Intolerant?
90% no
10% yes
 
Average Age in months for:
 
Sleeping thru the night: 14 months
 
NICU stay after birth: 13 days
 
First Tooth: 8 months
 
First words: 16 months
 
Walking: 20 months
 
Standing up: 15 months
 
Crawling: 11 months
 
Sitting unassisted: 7.4 months
 
Rolled over: 5.5 months
 
I was hoping to break each item down by type of EB, but not everyone answered with their type/subtype, so I wasn't able to get an accurate breakdown. Some of the results did surprise me though- particularly the reflux one. Perhaps I should have listed it as silent reflux. But no matter, these are interesting none the less. Thank you those who participated 🙂




Just like with healthy children, all EB children are different and some will do things sooner or later than the average child with EB. I hope this will give parents are idea of when they might expect their child to reach a certain developmental milestone and not to worry if their child is a little bit behind other kids their age. 
 
©Garrett's House 2021

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