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Serious post - EB

Posted by on Mar. 19, 2013 at 1:21 PM
  • 17 Replies
1 mom liked this


Quote:

What is EB?

Epidermolysis Bullosa (EB) — The Worst Disease You've Never Heard Of.™

Epidermolysis Bullosa (EB) is a rare genetic skin disease that causes the skin to be so fragile that the slightest friction can cause severe blistering—inside and outside the body. Today there is no cure. Severe forms of EB cause patients to live with constant pain and scarring. The worst forms of EB lead to eventual disfigurement, disability and often early death.There are many patients who are diagnosed with milder forms, which, while they can be extremely difficult to live with, are non-disfiguring and non-lethal.

The only treatment for EB is daily wound care and bandaging. The daily routine is a grueling, multi-faceted daily regimen. Caregivers, often parents or family members of EB children, must work in tandem with medical professionals to determine and administer different treatment methods to care for EB wounds.

With skin as fragile as a butterfly wing, EB patients are dubbed “Butterfly Children”. On the outside physical wounds prevent them from normal daily activities enjoyed by other children. On the inside, their dreams are the same as any child who loves, plays, learns and grows despite the pain and impediment caused by their disease. With the programs and services of Debra of America, EB’s Butterfly Children and their families find the support they so desperately need. Debra of America works to ensure that a life of struggle is also a life of hope for the 1 out of every 50,000 live births in the United States affected by EB.

I was introduced to this disease late last year due to a NY child, Easton Friedel, being born with it. A charity of sorts, The Butterfly Fund, was brought to my attention and seeing these children and their families struggle with this...it is heartwrenching.

I am thankful every day of my life that my children are physically healthy.

by on Mar. 19, 2013 at 1:21 PM
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Replies (1-10):
luvmymunchkins3
by on Mar. 19, 2013 at 1:28 PM

My ds has it and was in the NICU for a week after we was born because of it

lizmarie1975
by on Mar. 19, 2013 at 1:31 PM



Quoting luvmymunchkins3:

My ds has it and was in the NICU for a week after we was born because of it

May I ask...how is he doing now? How old is he?

These children have touched my heart and really, never thought I could become so emotionally invested in children and their families that I have never met.



luvmymunchkins3
by on Mar. 19, 2013 at 1:36 PM

He is almost 4 now and he is fine he just has t be very careful because his skin is so senstive.but from birth to about 1 1/2 was the worst.but not that he is older it eaiser to care for him.he has to limite his activity outside in the summer because getting hot causes him to get blisters.but its gets a litter better as he gets older.when he was born the top if his head had about 5 blisters on it and he got them in his mouth.his skin is his hand was peeling off and getting infected.it was awful.

but as of now he is a healthy happy 3 1/2yr old

Quoting lizmarie1975:



Quoting luvmymunchkins3:

My ds has it and was in the NICU for a week after we was born because of it

May I ask...how is he doing now? How old is he?

These children have touched my heart and really, never thought I could become so emotionally invested in children and their families that I have never met.




lizmarie1975
by on Mar. 19, 2013 at 1:40 PM



Quoting luvmymunchkins3:

He is almost 4 now and he is fine he just has t be very careful because his skin is so senstive.but from birth to about 1 1/2 was the worst.but not that he is older it eaiser to care for him.he has to limite his activity outside in the summer because getting hot causes him to get blisters.but its gets a litter better as he gets older.when he was born the top if his head had about 5 blisters on it and he got them in his mouth.his skin is his hand was peeling off and getting infected.it was awful.

but as of now he is a healthy happy 3 1/2yr old

Quoting lizmarie1975:



Quoting luvmymunchkins3:

My ds has it and was in the NICU for a week after we was born because of it

May I ask...how is he doing now? How old is he?

These children have touched my heart and really, never thought I could become so emotionally invested in children and their families that I have never met.




That's wonderful.


lizmarie1975
by on Mar. 19, 2013 at 1:42 PM



Quoting luvmymunchkins3:

He is almost 4 now and he is fine he just has t be very careful because his skin is so senstive.but from birth to about 1 1/2 was the worst.but not that he is older it eaiser to care for him.he has to limite his activity outside in the summer because getting hot causes him to get blisters.but its gets a litter better as he gets older.when he was born the top if his head had about 5 blisters on it and he got them in his mouth.his skin is his hand was peeling off and getting infected.it was awful.

but as of now he is a healthy happy 3 1/2yr old

Quoting lizmarie1975:



Quoting luvmymunchkins3:

My ds has it and was in the NICU for a week after we was born because of it

May I ask...how is he doing now? How old is he?

These children have touched my heart and really, never thought I could become so emotionally invested in children and their families that I have never met.




Is his name registered with The Butterfly Fund?


luvmymunchkins3
by on Mar. 19, 2013 at 1:42 PM

No its not.but i think its great that you are involved in something like that EB sucks but its great to always have someone supporting the family's because it can be very hard

Quoting lizmarie1975:



Quoting luvmymunchkins3:

He is almost 4 now and he is fine he just has t be very careful because his skin is so senstive.but from birth to about 1 1/2 was the worst.but not that he is older it eaiser to care for him.he has to limite his activity outside in the summer because getting hot causes him to get blisters.but its gets a litter better as he gets older.when he was born the top if his head had about 5 blisters on it and he got them in his mouth.his skin is his hand was peeling off and getting infected.it was awful.

but as of now he is a healthy happy 3 1/2yr old

Quoting lizmarie1975:



Quoting luvmymunchkins3:

My ds has it and was in the NICU for a week after we was born because of it

May I ask...how is he doing now? How old is he?

These children have touched my heart and really, never thought I could become so emotionally invested in children and their families that I have never met.




Is his name registered with The Butterfly Fund?



Barabell
by Barbara on Mar. 19, 2013 at 1:50 PM

I've never heard of it before. Thank you for sharing.

lizmarie1975
by on Mar. 19, 2013 at 1:57 PM



Quoting luvmymunchkins3:

its great to always have someone supporting the family's because it can be very hard

I was blown away at the costs of just the dressings. I mean, tens of thousands of dollars a year...and that's after insurance!

die4u
by on Mar. 19, 2013 at 2:05 PM

BUMP!

luvmymunchkins3
by on Mar. 19, 2013 at 2:12 PM

Yes it can be .we have been so lucky our son doesnt have it as serious as some children.but i wanted to thank you for making this post i went to the FB link and im going to become more involved with this i think its great i never knew anything like that was out there

Quoting lizmarie1975:



Quoting luvmymunchkins3:

its great to always have someone supporting the family's because it can be very hard

I was blown away at the costs of just the dressings. I mean, tens of thousands of dollars a year...and that's after insurance!


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