PHISHORRE EXTRAORDINAIRE

PHISHORRE EXTRAORDINAIRE

Wednesday, May 4, 2011

Derma Silk - A Testimonial. (Recessive Dystrophic Epidermolysis Bullosa)

I've been told by our local Derma Silk representative that Customs Canada is sticking a 17% duty on Raquel's clothing.  This is insane!!!!  Why do we have to battle on every front for the care of our child?  To steal a quote from Daniel, "This isn't Prada" wear!!
Anyway this is what I wrote.

    Our baby was born with Recessive Dystorphic Epidermolysis Bullosa (RDEB).  It’s is an extremely rare genetic skin disease, where collagen 7 is missing in the bottom layer of the skin.  The absence of collagen 7 means the skin has no anchoring fibrils which results in blisters and sloughing skin from only the mildest forms of friction.  Our daughter’s skin is so fragile that even the slightest miss touch with a finger nail will damage her skin.    
We first became aware of her disease when she was born without any skin on her feet and a few spots on her hands and mouth.  Her condition rapidly deteriorated even with aware handling while in the NICU.  Her skin basically started to fall off in huge blisters all over her torso and extremities.  Poorly constructed and extensive bandaging also had a terrible impact. 
When the skin heals with this form of EB it does so in a scaring fashion.  Without proper and extensive preventative care many of children with RDEB end up with clubbed hands and feet due to strictures that happen as a result of the scarring and tightening of the skin.  A host of other issues relating to constant and continual raw and open skin areas are also a concern, the main being; skin cancer, which is among the leading causes of death and concern for people with RDEB.  It should also not be over looked the constant pain involved in having open and blistering skin where a dime sized sore can expand rapidly to 5x in area when over looked.
After a month in the NICU and confident in a few bandaging techniques directly related to protecting her web space (hands and feet) she came home dressed in her Derma Silk clothing.  The difference between how she was able to heal and the level bandaging required was drastic.  Only in rare occasions are we forced to bandage any blisters that are present on her torso, elbows and knees.  Her Derma Silk clothing has been instrumental in letting her wounds heal and breathe.  The clothing also acts as a valuable slip barrier, so that the friction of picking her up happens between the silks and her outer clothing layer, preventing countless abrasions.
Our child is 10 months old and since her 3rd day she has had her hands bandaged 24/7.  We have just started to let her thumb loose within her Derma Silks and with great results over the last 2 weeks.  This is something we’ve been advised against till the age of 4 when she becomes more aware of her surroundings and body.  She lives in a very controlled environment, but this is a great breakthrough in allowing her to better experience the world with her hands.
It has also been a great advantage having the antimicrobial agents within.   Our daughter has had many sores on her body to date and has yet to have any type of infection in areas open to her Derma Silks.  She is able to heal quickly with none of the issues we have when adding more bandaging.  I have been very active in researching other cases of RDEB and can’t stress enough what a help this product has been in every level of her wound care and prevention.  The advantages are so great that I cannot imagine putting any other product next to her skin, ever.
Sincerely,
Ryan Hultman.

2 comments:

  1. Thanks Ryan. Your letter is very touching and we are so pleased to hear that Raquel is doing better.
    Keep in touch,
    Genevieve

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  2. Hi Ryan
    I am an adult with EB and have just discovered derma silk. I have a friend overseas that is sending me some as a gift. This may be an option for you. I am happy to see it works with your daughter and wish you both all the best!
    Gemma Riley-Laurin

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