Dear Editor,
My name is BELIEVE and I live with Stephen Johnson Syndrome - S.J.S and it's DEADLY!
Imagine someone constantly pouring rubbing alcohol on an open wound!
Your skin constantly on fire! Repeatedly pealing the scab off of a fresh
wound! Well, meet my life long partner Steven Johnson Syndrome
(S.J.S)
In life we often tend to take everyday things for
granted! The simplicity of being able to just lay there and breathe in
comfort, our sight, being able to sleep at night, talk, hear, or even
drink a glass of water. Recently I went through a very
humbling experience which really moved me and brought me closer to God
and the people in my life.
For the past 13 years I have
been living with a condition called Steven Johnson Syndrome (S.J.S)
which is a life-threatening skin condition, in which cell death causes
the epidermis to separate from the dermis. The syndrome is thought to be
a hypersensitivity complex that affects the skin and the mucous
membranes. Although the majority of cases are idiopathic (without a
known cause), the main class of known causes is medication, followed by
infections and, rarely, cancers.
When I was in grade
eleven I was first diagnosed with S.J.S after weeks of seeing different
doctors and endless testing. Still not 100% sure what exactly caused
it, it could have been the combination of Motrin along with other
antibiotics that I was on at the time. Its a condition, that I now live
with that affects my immune system and has me constantly living on the
edge. I have to watch what I eat, what I drink, what products I use and
more importantly what medications I take whether its perscribed or over
the counter.
By sharing this with you'll I would love
to create an awareness of S.J.S in the Bahamas because its so often
mis-diagnosed, mis-treated and in most cases ( locally ) doctors seem to
run away from the responsibility of dealing with it. This was never
more so evident about two weeks ago when I noticed a few symptoms of
S.J.S on my skin and mouth area (which I think was provoked by a new
brand of toothpaste I started using). I went to a local clinic that is
familiar with my background and condition. After a routine check up the
female doctor at the time seemed to be very knowledgeable of S.J.S and
prescribed to me an antibiotic to stop any further infections. She
assured my mom and I that this will not cause a negative reaction or
aggravate my S.J.S any further than it already had been.
Needless
to say we left the clinic, got the medication and as soon as I got home
I took two of the pills to hopefully stop any infections and help with
the excruciating amount of pain I was in. With S.J.S once the process
starts there is no medicine that can be taken to prevent or stop it, It
has to run its course! It all depends on how soon you catch it, how you
treat it and how your body's immune system reacts to it.
Basically
what happens as in my case, blister like bumps appear on my skin which
eventually show up in your mouth, inner cheeks, throat, gums, nostrils
and even eyes. Everyone who has ever had a blister knows once it
bursts, it burns and forms a scab like texture. Well imagine your
mouth, throat and nose being filled with blisters and they burst… it
feels like someone is constantly pouring alcohol on an open wound, the
moisture in your mouth doesn't allow a scab to form right away so the
healing process is long and vigorous.
The next day I woke up
feeling worst than ever, my mouth was completely inflamed and my left
eye was swollen and appeared as though it had a blister on it. I rushed
to the computer and decided to Google the medication the doctor had
prescribed to me and there it was clear as day " Klaricid also
contributes to dangerous skin infections, such as Stevens-Johnson
Syndrome and toxic epidermal necrolysis. "
Why the hell
would she have prescribed to me something that could have potentially
cause my death! Lack of knowledge, too lazy to research it, not taking
the condition as life threatening or maybe it was the fact that she was
to eager to move on to the next patient and make the next dollar. Who
knows!
Long story short, I called the clinic the female
doctor wasn't in and the current doctor did not seem sympathetic at all
as to what had happened and simply told me to stay off the antibiotics
for at least 48hrs. A day later I'm still in severe amounts of pain,
cant eat, can barely drink water, my eye is swollen and stuck shut, I
probably haven't slept all of 3 hours in two days.
I go
back to the clinic and see the main doctor who takes one look at me
after I told him what had happened and instead of actually dealing or
attempting to treat me, he decides to brush me off and tell me to go and
see an eye specialist ( which at the time I did need to see ). However,
he was not apologetic and did not want to take any responsibility for
the female doctor working under his company prescribing me the wrong
medication. NOT EVEN a follow up call!
Later that day I
went to the eye specialist and found out the S.J.S had caused burning on
certain parts of my eye and can potentially leave scar tissue that can
lead to permanent sight damage. I then headed over to a different
doctor and he seemed to be aware of S.J.S as well, but also very
reluctant and timid to treat me and give me any pain killers. He
prescribes me a mouth wash to try and ease the pain (which in reality
eases the pain for all of maybe 20mis).
So, here I am
two weeks into this, handed over from doctor to doctor, haven't been
eating, I can barely drink water it hurts so much going down, sleep
deprived, the pain is so severe it sends shocks through my body every
few seconds. So agonizing at times its almost like your body goes in
shock and eyes start to roll in the back of your head!
The
only thing I am surviving off of now is the constant love and prayers
from my family and friends. God is so AMAZING, so many times I laid
there thinking about over dosing on something or maybe taking sleeping
pills, but then this little voice would say to me you are still blessed
with Breath!
.. and its so true, as I laid there in what
appeared to be a lifeless body, God still blessed me with the gift of
breath over and over. So at my my lowest and most painful moments I
prayed and sang songs of praise and thats how i made it through it. The
constant love and care from my mom, dad and grammy kept me going.
Beautiful angels in the form of my friends Jenique and Crystal we're at
my side every day looking after me and easing the pain with words of
encouragement and love.
I ended up going to a clinic "
The Hollistic Family Medicine Center " and for the first time a doctor
actually took the time to understand the pain I was going through and
did not brush me off. I was put on a drip to try and give my badly
dehydrated body some of its fluids back and recommended to be admitted
into the hospital immediately.
…. So here I am now, not
100% better but well on my way there! I can manage to drink a cup of
water, sleep more than 30 mins at a time and breath easier knowing I'm
on my way to recovery.
PLEASE, before you rush
and intake any type of medicine research the side affects! Every day
over the counter drugs such as Motrin, Children's Advil, Bextra,
different types of antibiotics and even everyday products such as
toothpaste, mouth wash and even MSG can be leading causes for someone
developing Stephen Johnson Syndrome. This condition causes severe skin
burning, organ damage, permanent sight loss and in most cases death.
I hope this was helpful and causes some awareness and even prevention!
Thank
you to my beautiful angels sent from God, mommy, daddy, yaya, Jenique,
Crystal, Juan, Lisa and Cina .. I love you'll beyond words!
For more info :
http://www.skinassn.org/
http://en.wikipedia.org/wiki/Stevens–Johnson_syndrome
