My name is laura, and i am 19 years old and live in wigan, greater
manchester, England. I have been reading through other peoples stories
displayed on this site and i am now a little confused to which condition i
actually have. I thought it might be best if i write my story and if
anyone can relate to the condition i have then i would greatly appreciate
it if they could email me, as i have never actually met or talked with
anyone with my condition.
It all started when i was about 8 years old. I noticed a mark on my skin
just below my left breast. My mum took me to the doctors and he said that
it was just a stretch mark and told me it was nothing to worry about. Over
the next few months i started to develop the same mark on the inner side
of my left fore arm. The mark was like brown little dots that appeared to
be fusing together. I went back to the doctors as me and my mum thought
there may have been something more behind it than stretch marks, as my
left side was no bigger than my right. I was then refered to wigan
infirmary to see a specialist. For the next 4 -5 years i lost count how
many different doctors i seen, and every time i had to explain my story
from the start, which was very frustrating for such a young girl. I was
given lots of different names for the condition by different doctors, some
of them were so long we had to ask the doctors to write them down. At the
time i was a very keen swimmer, and my condition didn't seem to bother me
health or fitness wise. I was part of the local swimming club and used to
take part in gala's all over the country.
When i was about 13/14 years my condition started to get me down as i just
felt like i was going round in circles and nothing was actually being done
to stop, what i called "my rash." By this time the condition was all down
the back of my left leg, the inner side of my left fore arm, patches were
on my back and bottom. It mainly seemed to be my left side that was
affected the most at this time. I was then introduced to a doctor called
dr yell, a south african doctor who took one look at my condition and
straight away said that it was morphea! I was quite relieved to finally
find out what i had. I was given numerous creams, i recall one in
particular bein like wax, which i got my younger sister to rub on me, as
it really smelled (ha ha!). It smelled like a farmers field, so it didn't
last very long. I was then given some tablets i cant remember what they
were called, but hey didn't work. I was then refered to another female
doctor dr stewart, who then refered me to a friend of hers dr goodfield.
(I know what your thinking! what a nightmare, all them different doctors.)
Dr goodfield was based at Leeds general infiramry in yorkshire. This is
when things started to happen. He diagnosed me with having 'Diffuse
Atrophic Morphea'which started off as brown dots which fused together to
form brownish/pinkish pacthes all over my body. I also had some other
patches which were slivery in appearance in certain places, this was
another condtion mixed in with the morphea called 'sclerderma'? (i think?)
Since being refered to dr goodfield in leeds, i have had PUVA treatment
which is mainly used for conditions such as psorisis. (I was about 15 at
the time still at high school.) This treatment involved me taking some
tablets 4 hours before the PUVA and then straight away wearing sun glasses
so that my eyes would not be damaged as these tablets made my eyes more
susceptable to uva rays. My dad then picked me up from school we would
drive to hope hospital in salford, manchester, which would take 3/4 of an
hour, as this was the nearest place with this treatment. I did this 3
times a week for two months. PUVA was like a stand up sunbed, with lazer
beams in it, which i only went on for a few minutes each time. It was
hoped that it may help to take the pigmentation out of the condition.
Apart from making me very tanned, which i didn't mind at all, it didn't do
anything and we all decided to give up on that treatment. It was also very
hard on me at school. Even though overall i am quite a confident person
and have a lot of very supportive friends who love me 4 the bubbly person
i am, the kids in my year at school who didn't know about me, took the
mick out of me for wearing sun glasses in class in the middle of winter,
which was hard and upset me at times.
I have had several biospys and blood tests over the past coming up to 12
years, and it is still spreading. I am now nearly 20 years old and have
learnt to live with it, this condition is part of me and as far as im
concerned if people dont like it then dont look.
I haven't always been this easy going about it, don't get me wrong i still
get upset at times cos i feel self conscious about things i wear when i go
out round town. When i was 15/16 years i used to be very conscious of what
people thought. I used to hate going out with my mates, because they would
all be in their skimpy tops and i would be there wearing a cardigan and
jeans. I used to cry my self to sleep sometimes. I used to drive my mum
and dad up the wall feeling sorry for myself saying that they dont know
what its like having people staring, making comments and saying things
like "eeeee whats that?" i thnk all those teen age hormones didn't help
either!
The main areas affected on me now is the back of my left leg, my left
inner fore arm, all my back (patchy), my left breast, my bottom, my left
foot and a few patches on my neck, which alot of people always think are
love bites. Luckily my face and hands are ok, but lately my right arm has
started to develop the brown dots that appear to be fusing together. At
present i am not on any medication, as everything they have offered me has
had quite bad side effects such as kidney problems, and i dont want to put
myself at risk when other than the scars i have i am other wise fit and
healthy.
I feel that i lead quite a normal life. I am a veterinary nurse at present
and i m hoping to join the police force soon and specialise in the mounted
police or the dog section. I aslo have a boyfriend called daniel who i
have been with for 2 years, he is a royal marine. daniel is a very open
minded person and he said he loves me just as i am which helps me more
than he probably knows. It took me a while to tell him about my condition
at first, i really thought it would put him off, but it didn't and we are
very happy together!!
I think i will end my story here! Thank you to anyone who reads this! If
you have a similar condition to me then please e-mail me i'd love hear
from you!
Thanks again love laura x x x x x x
lmmorgan83@yahoo.co.uk
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