"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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---------------------------------

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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