Hi Hon, was good to hear back from you, where do you live? and why havent you
had blisters in 15 yrs? that is wonderful!! my son who is 27 has problems with
his shins also, thats where his main problem is, that and his hands and
feet...his poor shins are so bad and i worry about infection...he wont go to the
dr any more coz they wont do anything for him but give him cream..he always had
trouble at school and people still ask whats wrong with him...its heartbreaking
as a mom,but ive always told him he was beautiful...my 2 grandchildren also have
it. my granddaughter is 9 and her knees and shins are pretty bad, she quit
cheerleading cos the other kids make fun of her...anyway ,thanks for responding,
it helps to know were not the only ones and there are others out there that
care....thanks , Mae...feel free to email me anytime

"hon_w.rm" <no_reply@yahoogroups.com> wrote:Hi Mae
Welcome to the group, like you said the doctors thought EB sufferers
would grow out of it as we reached our adulthood but obviously that
was wrong, but back then, they didn't know any better and
probably
compared EB to something like Eczema which people usually grow out of.

Epidermolysis Bullosa is slowly being recognised more openly mainly
due to the fact that millions of people watched the award winning
documentary about `the boy who's skin fell', and thanks
to the
constant work of the DebRA charity and other charities supporting
research into EB.

I know that they have also shown this remarkable documentary over
there in the States and hopefully people over there would see what
kind of heartache EB causes to sufferers and their parents.

I also have a younger brother with EB and his EB is not as severe as
mines, I always thought it was due to the fact that he had better
medical care and treatment when he was born. I think that he avoided
major blistering when he was a baby as the doctors and nurses was
aware not to use surgical tape or anything that causes friction to
the skin so there minimise the damaged to the skin.

I found out once an area breaks down into a blister/sore it usually
stays there as the skin on that site is damaged and the EB has
affected that area. But EB can also mutate which baffled the
scientist at first when they saw how come some part of my body is
normal and others keeps breaking down in blistering. I remember when
I was a little child my shins was always breaking down into huge
blisters and subsequently into open sores but now they haven't
blister for over 15 years! I just wish this kind of mutation would
happen on my badly affected areas.

God Bless
Hon

--- In butterflychildren@yahoogroups.com, Mae Lehman
<thelehmans4603@y...> wrote:
>
>
> "hon_w.rm" <no_reply@yahoogroups.com> wrote:Hi to everyone here,
hope you're keeping well, thought I log on
> whilst I was on the computer.
>
> I was wondering how much people know about EB in terms of
research?
> As I was curious to find out, I don't know much but I have learnt
> bits and pieces from here and there. Which I shall gladly share
from
> what I can recall from my own memory, so please don't take it as
> 100%
> accurate information as my memory can be poor at times.
>
> Research progress over the last five years has been tremendous, I
> remember a time when the scientist couldn't identify each form of
> EB
> but now they can.
>
> There is also a pre-natal test to determine if the unborn baby has
> EB, I don't know at what stage they can do the test.
>
> EB has been found in nature as well as humans which astonished me
> when I found that out. The scientist has also have EB laboratory
> mice that they can perform experiments on.
>
> The good news is that they have managed to heal EB in some test
mice
> by replacing the faulty gene with a normal copy…but don't get
> your
> hopes high as this is still early stages, and human trials are
years
> away.
>
> The current research that I know off is to target the entrance
point
> where the faulty genes is based, at this level the scientist can
try
> to correct the faulty gene for all types of EB instead of
> concentrating on all the different subtypes. It's a little hard
> to
> explain in words but I shall try doing a diagram to explain: -
>
>
> --- skin ---- faulty gene --- subtypes
>
> -- skin --- corrected gene --- no subtypes
>
>
> If you know more then please share or if you think I made a mistake
> then please correct me. Hopefully with the current rate of
progress
> in terms of research, a cure for EB will be in sight which gives us
> sufferer's a beacon of light to look out for.
>
> On another subject… I managed to complete my sponsored Skydive
> from
> 12000ft on the 17th August, it was fantastic, even though I
suffered
> a bit where the straps rub against my skin, but it's nothing I
> can't
> handle. Altogether with my friend we managed to raised over
> £1'300
> for the DebRA charity.
>
> Just thinking of something daring and unique for a challenge next
> year… Any suggestions? Anyway better get going, take care for
> now,
>
> God Bless
>
>
> Hon
>
>
>
>
>
>
>
>
______________________________________________________________________
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> Butterfly Children Yahoo Group Home Page -
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> Email the group - butterflychildren@yahoogroups.com
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> EB websites: http://www.debra.org.uk - http://www.debra.org
>
>
>
>
>
>
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> ---------------------------------
>
> Hi Hon, I am new to butterfly children and your information is very
informative...my 27 yr old son and 2 grandchildren have EB too...we
live in Arkansas U.S.....bACK IN 1978 THE DRS HERE DIDNT KNOW
ANYTHING ABOUT IT...MY KIDS HAVE THE SIMPLEX FORM, BUT MY SONS IS
WORSE THAN THE GRANDBABIES, THE ONLY THING THE DRS TOLD BACK THEN WAS
THAT IT WOULD GET BETTER AS HE GOT OLDER..BUT THAT WASNT THE
CASE....CONGRATULATIONS ON YOUR JUMP....GOOD TO HEAR FROM YOU....mAE
FROM aRKANSAS
>
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EB websites: http://www.debra.org.uk - http://www.debra.org






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