My Journey So Far:
A TIMELINE
2006: And so it begins…
When I was about 18, one 50p
sized mark appeared in the centre of my back. It was grey in colour and
slightly indented. It appeared so suddenly and randomly that my Mum asked me if
I had bruised myself. It wasn’t itchy or red, it wasn’t sore and if Mum hadn’t
noticed it one day when I got out of the shower, I wouldn’t have even known it
was there. I went to my GP, Dr Flasz who didn’t know what it was, and he
refered me to The Harold Wood Medical Centre to see a dermatologist called Dr
Carrabott. I had a biopsy performed by another dermatologist named Dr Kakad and
subsequent tests rule out skin cancer. Dr Carrabott said it could be a
condition called Morphea, and explained that it is a form of Scleroderma that
is limited to the skin. He explained to me that there is no clear cause, and
although it is regrettably incurable - it isn’t life threatening. He said that
it could get progressively worse, but he didn’t explain to me that this was extremely
likely to happen. He said that he would like to arrange a clinical meeting
where other doctors could take a look too, and together they could work out the
best form of treatment. For the meantime, Dr Carrabott gave me some creams that
are usually prescribed for Psoriasis. Over the next few months the creams didn’t
seem to have any effect whatsoever. The date of the clinical meeting came around,
and I went to The Royal London Hospital in Whitechapel, East
London. I sat in a room while around 45 doctors and student
doctors came in to take a look. Many of them asked me questions and others
didn’t even acknowledge me. I found the experience daunting, and invasive. A
while after the clinical meeting, Dr Carrabott informed me that the doctors
where unanimous in their diagnosis of Morphea, and they wanted me to continue
the cream and monitor me at Harold Wood Medical Centre. Like any girl of my age
would be, I was concerned about my appearance, people had started to notice it
and ask me what had happened. To the untrained eye the scars looked like burns.
I started carefully selecting clothing that covered me, and I started to grow
my hair longer and longer in an attempt to cover my back.
2006/2007: A delay
After months of use, topical
steroids were doing nothing other than making my skin sore. By this point the
one small patch had spread, it was now two larger patches of grey indented areas,
which to the untrained eye looked like burn scars. I returned to Dr Carrabott
who asked me to try a different brand of cream. He explained that some Ultra
Violet light (UVB) could be used to treat Morphea, but the treatment would
require going to a hospital several times a week. At this time I was studying
at DeMontfort University
in Leicester, and so if I was to receive this
treatment I would need to undergo it at The Royal Leicester Infirmary. Dr
Carrabott told me to go back to University and he would write to the Royal
Leicester Infirmary to arrange the treatment there.
2007/2008: A complaint
I am not too sure, what went on
around this time, it is a bit of a void, but I never underwent treatment at the
Royal Leicester Infirmary. Whether Dr Carrabott never made the request I do not
know. I lodged a complaint with the General Medical Council because of the
unreasonable amount of time it had taken to move my case from diagnosis to
treatment – the appearance on my back had worsened substantially in this time. What
I now (2013) know is, that even if he had transferred me it would have been
unlikely I could fit the 3X a week treatment around my university timetable
anyway. And with the benefit of hindsight – even if I had this treatment
wouldn’t have helped anyway. I turned a blind eye to what was happening, and
concentrated on my studies instead.
2009: Not a typical case?
By this point there are three large
lesions on my back, they are still grey and indented and look like burns.
Interestingly, they are all on the right hand side of my back, starting at the
spine and spreading across to the right. By this point I have researched
Scleroderma thoroughly on line, I have looked at research papers and even
emailed doctors from the USA.
Around this time I started to question the diagnosis of Morphea. Unlike typical
Morphea, my lesions have never started as a rash, they’ve never been pink or
purple, and their grey indented ‘burnt out’ appearance doesn’t happen slowly,
but rather - suddenly. I have started to question why I am being passed around
dermatology departments when the root of the problem lies in the immune system
– surely I should be seeing an immunologist? I have now finished University and
moved back home. Having lost contact with Dr Carrabott, I decided to return to
my GP to request a continuation of treatment. He re-starts the process and
refers me to a dermatologist called Dr Piras at Queens Hospital,
Romford. Dr Piras takes the time to listen to my problems, and says that she
would like me to try an immunosuppressant cream on the lesions in the mean time.
I return to University in Leicester with
creams in hand – I can’t wait for university to finish so I can go home and be
treated with phototherapy. While I am studying I find myself struggling to
cope, and speak to my course leader who is deeply concerned about my mental
state. I go to a doctor who diagnoses me with severe depression. I am
prescribed anti-depressants to help me cope, and I am advised to attend
counselling.
2010: Shining some light on the matter
In spring 2010, after the
immunosuppressant creams did not work, Dr Piras agreed to try UVB treatment. Administering
this kind of treatment would not be easy in the summer months, as it required
controlled exposure to the sun. She explained to me that I would need to keep
my body covered at all times. Before I started the treatment I also had to sign
a disclosure to accept that my risk of getting cancer could increase. I was
then referred to the dermatology nurses at Queens Hospital,
Romford – their names are Nicki and Sally. Nicki has a gentle demeanour and I
instantly like her, strangely I have met Sally before, she is the Mum of my
brother’s childhood friend. I have an emotional breakdown when Nicki explains
that I will need to attend Queens
Hospital 3X a week where
I will take off all my clothes, but on a pair of goggles and a helmet and step
inside a phototherapy unit. This unit looks like a stand up sun bed, and
essentially it is, but a lot more powerful and for medical purposes. Once
inside the unit a nurse will check you over and then start the power, while it
is turned on I have to move my arms and legs in a circular motion to ensure
even coverage. The thought of practical strangers seeing me naked, scars and
all, was too much to bear. But in retrospect the thought of doing it was far
worse than the reality. The side effects of this treatment were unpleasant, my
skin felt sore – the best way to explain it is imagine if you had been lying in
the sun without sun cream on for a while, you’d feel raw afterward. I had about
three months of this treatment, and returned to Dr Piras for a consultation.
The treatment had definitely not slowed the process. She said that the lesions
had softened to the touch, but they were much darker and more noticeable. The
next step was to try a deeper form of the same treatment. I returned to Nicki
and Sally and they explained that I would be having a treatment called
Bath-PUVA. As before, I would keep my body away from sunlight and sign a
disclosure, although this treatment would involve a higher cancer risk as the
UVA rays penetrate much deeper than UVB. As before I would be naked in a
phototherapy unit with the goggles and helmet, but this time I would soak in a
bath immediately beforehand, the bath contained a chemical called Psolarin and
would be controlled and timed by the nurses. Psolarin encourages deeper
penetration of UV rays. I underwent this treatment three times a week for
several months, and the side effects were as before, but much more severe. My
skin burnt almost every time I had treatment, it was incredibly painful to do
simple things like walking, because my clothes would rub against my sore skin. I
exhibited symptoms of sunstroke, such as headaches, tiredness and fatigue. I
endured the treatment for almost three months. Each time before commencing
treatment Nicki or Sally would look over my body and make sure all was well,
one day Nicki noticed a new lesion appearing on my lower back at the top of my
bum. Obviously, the treatment had not worked, and there was concern that it
could even be agitating the condition!!! She consulted Dr Piras who said to
discontinue Bath-PUVA immediately and return to using immunosuppressant creams
while she sought advice.
2011: Moving things on…
As I have mentioned before, I
felt that I wasn’t in the right place being treated solely by dermatologists,
and explained to Dr Piras that I would like to receive treatment from an
immunologist. I told her that I had researched more invasive treatments on the
internet and there had been trials with more involved drugs that were showing
promise. She agreed to look in to the matter. Dr Piras frequently attended
dermatology meetings at The Royal London Hospital in Whitechapel, East London. She asked me if she could take my case to
the next meeting, which I agreed to. In my absence she discussed my case with
professionals including Professor Cherio, a leading research doctor in his
field. Eventually I was transferred to be under his care. I met with Professor
Cherio frequently throughout 2011. I had suspected a misdiagnosis for years,
and Professor Cherio said he believed that I didn’t have atypical Morphea, but
rather a rarer form of the condition called Atrophaderma of Pierini Passini.
Where there is a lack of red / purple inflamed rash like lesions, but rather a
grey brown scar with cliff top like more defined borders. I approached the
issue of taking drugs to try to control the formation of lesions, but Professor
Cherio wasn’t keen. He felt that there hadn’t been enough thorough research to
declare those drugs ‘safe’ for people of my age and sex. He said that taking
drugs for Morphea wasn’t a good idea, basically the side effects were more
serious than the condition itself, I could be left infertile and the drugs
could cause liver failure too. He gave me a topical steroid cream and asked me
to try it while he considered the next step. I later returned to him, and he
was concerned that the topical steroid had not slowed down the formation of
lesions. He asked if I would be willing to undergo a clinical meeting. I was
reluctant to do this, because I felt that I had been exploited when I did this
for Dr Carrabott back in 2006 and it had got me nowhere. Professor Cherio
explained that this would be different; it wasn’t for diagnosis purposes this
time. He wanted to see if the majority of doctors agreed with his decision to avoid
administering drugs. I agreed to return for the clinical meeting, and he asked me
to rotate the use of the topical steroid and the immunosuppressant creams in
the mean time. When I returned to the Royal London
Hospital for the clinical
meeting I was devastated to see Dr Carrabott in attendance. I felt that I had
moved in one huge pointless circle, and got nowhere – and I bore the scars as
proof. After the clinical meeting I met with Professor Cherio – who told me
that the consensus was that my condition, although progressive and unstable is
not life threatening, and therefore dermatologists at The Royal London Hospital
were unwilling to prescribe drugs at this stage. He asked to keep monitoring
me. I was forced to accept this decision and went home feeling hopeless. A few
months later I attended a routine monitoring consultation where I met Dr
Gulati, Professor Cherio’s registrar. She was concerned that I might be showing
symptoms of Lichen Sclerosis – which affects the genital region, but may be too
embarrassed to say anything about it. She took a look at the area and was
satisfied that there was nothing wrong there. I had been experiencing severe
back pains frequently, and the aches were such that normal painkillers did not
help. My GP had prescribed several painkillers that had also not worked, and
eventually he had prescribed a low dose of morphine. I explained this to Dr
Gulati and begged her to consider the possibility that my condition wasn’t
Morphea – but rather that it was Linea Scleroderma, that was now affecting my
muscles. Once again I pushed the issue of drugs to stabilize the lesions that
still continued to form. Dr Gulati said that she would refer me for
thermo-imaging. She explained that this would show how ‘active’ the condition
is, and if it was particularly active the doctors might reconsider the
possibility.
2012: In safe hands…
I was referred to The Royal Free
Hospital in Hampstead Heath, North London – a
leading hospital in researching Scleroderma, and one of the only places that
use thermography to treat it. I was extremely pleased to learn that I would be
treated by the Scleroderma Clinic in the Rheumatology department, under the
watchful eye of Professor Denton, a name I recognised from my research. Upon my
first visit I met with Dr Kevin Howlett, a thermo-imaging expert, and had my
first photograph taken. Here’s how it works; because the lesions were on my
back I first had to take of my clothes and bra and allow the area to cool to
room temperature, after about 20 minutes the area is ready to be photographed.
The special camera produces a greyscale image that is then transformed into a
colour version with various layers of colour. The camera picks up levels of
activity and displays it as colours ranging from blue (coolest and least
active) – through to yellow and orange (warm and some activity) – and red (hot
and most active.) Using this image doctors can establish how active the
condition is, what stage it is in, and also what treatment would be most
effective in slowing down the process. I met with Dr Quillinan, Professor
Denton’s registrar. She was extremely sympathetic to my situation, she took a
long time asking questions that others before her hadn’t even though to. She
was extremely thorough and gave me the distinct impression I was in safe hands.
She listened to my complaints of back ache and agreed that it was connected to
scleroderma. Unlike so many doctors before her, she did not dismiss my request
for drugs and discussed the options with me. She explained that the
phototherapy showed enough activity to prescribe drugs – but that it isn’t
without risks in women of my age. She explained that I could take a low dose of
Methotrexate a chemotherapy drug that is used to suppress the immune system.
This would be taken once a week and would (hopefully) slow down the condition
in the long term. Because of the serious side effects that Methotrexate can
cause, I would need to have my blood monitored. This involved weekly blood
tests, for the first month and then monthly after that. I was absolutely
petrified, I had a huge phobia of needles, and the thought of this made me feel
sick. Alongside this she wanted me to have a steroid to attack the activity
that had ‘flared up.’ The drug, which was called Methylprednisolone, would be
administered in hospital by UV drip; I would require three pulses at weekly
intervals – great, more needles! Dr Quillinan listened to all of my concerns
and put my mind at ease, she said that provided I was monitored effectively – I
would be safe and they would stop the treatment at the first sign of anything
potentially going wrong. I believed her, and left the hospital feeling more
positive for the first time in the whole entire time I had had the illness. I
started taking Methotrexate 7.5mg immediately, and I took to it well, I didn’t
experience many of the nasty symptoms that others had complained of, but I was
more tired than usual. I was
subsequently prescribed folic acid to help me cope with fatigue. While I was
having this treatment I didn’t touch alcohol for six months – I tried to look
after myself the best I could, and all things considered, I felt relatively ok.
I handled the steroid pulses well too, each session took about 4 hours to run
the drug through my body by drip, and I would sit in a day ward while it
happened. The side effects meant I was left with a nasty metallic taste in my mouth,
and I felt sick and tired for a few days after, but I was still able to go to
work and live my life relatively normally. My weight fluctuated a little around
this time, the difference was around half a stone, I would go from having no
appetite at all, to eating constantly and insatiably and piling on weight, and
once that weight was on it was hard to shift. My hair started to fall out, and became
limp and lifeless, it wasn’t noticeable to other people though, and I was
thankful for that. Three months later I had another thermo-imaging session with
Dr Howlett, and the doctors felt it showed a little improvement. Dr Quillinan
increased the Methotrexate to 10mg per week and told me that I wouldn’t need
more Methylprednisolone for the time being. As winter approached, I started to
notice differences in my body; due to my weakened immune system I caught
illnesses very easy, such as coughs, colds, sore throats and water infections.
I was given a flu jab by my GP to try to combat this. I met with Dr Quillinan every
three months or so for a consultation, and each time I had a thermo-imaging
session with Dr Howlett. It was during one of these consultations that I
complained of worsening back aches. Dr Quillinan referred me to a
physiotherapist at King Georges Hospital
in Goodmayes, East London. I had a thorough
consultation with a lovely therapist called Angeli – she explained that the
condition had fused my muscles all along the right side of my back, and that as
a result of this I needed to build up the muscles on the left hand side to help
balance it out and carry some of the strain. By this point flexibility had
become a real issue; I am extremely stiff and can’t bend and twist the way I
once could. Angeli was concerned because I had a new lesion appearing on my
right shoulder, which was slowly restricting my movement. Angeli has worked out
some exercises to help me cope with the changes that were taking place – I now
meet with her every two weeks, although she says it will take a long time to
see feel any major differences.
2013 - PRESENT: A turn for the worst…
I returned to The Royal Free in
February 2013 for routine monitoring and had another thermo imaging session. Dr
Howlett explained that the image was more symmetrical than had been seen
before, and that it was a positive sign. On this occasion I didn’t see Dr
Quillinan for my consultation, but instead I met with an associate doctor of Dr
Ong’s. The doctor was pleased with the thermo image, and said that I was to
continue taking 10mg of Methotrexate for another three months. As I was about
to leave the room, I said “It’s probably nothing, but I have a some marks
appearing on my forehead and on my chin – I just wanted to bring it up to put
my mind at ease.” I had noticed these particular marks appearing in the summer
of 2012, when the sun seemed to make them greyer and more noticeable, but I had
never pointed them out to doctors as I felt they were probably irrelevant.
Sometimes it was hard to tell if they were nothing more than veins close to the
surface. The doctor asked me to remove my make up and shone a light on the
areas – she seemed very concerned and went to get Dr Ong himself. The two
doctors looked at my face closely and decided that given the visibility of the
area in question, it was best to act quickly, in order to take no chances. As I
had so far responded well to Methotrexate they asked me to up my dosage to 15mg
per week. They also said that they would schedule more intravenous steroid
treatment; however they wanted to hit the activity hard and fast – so instead
of undergoing one treatment a week for three weeks like previously, this time I
would be admitted in to hospital and would receive one pulse per day for three
days. I was told to go back to Dr Howlett and have my face thermo imaged. As Dr
Howlett was looking at the image and talking me through what he it showed, the
doctor came in to the room and took a look. She explained that there was (red)
heat activity shown in the image – but as the forehead is a hot area with veins
close to the surface, the image was somewhat unreliable. I felt devastated –
until now I had been able to cover my scars – but now my biggest fear had
become a possible reality.
We met in 2008 when I was working
hard (or hardly working) as an admissions and enrolment temp at Havering College, at the time Jen worked full
time as a course advisor there. We met in the early days of my illness, when
scleroderma was really just a word to me - I was more out going,
carefree, and it showed. Jen was fun loving too, and it didn’t take long for us
to bond over alcohol fuelled nights out. Through Jen and Havering College I established a circle of
good friends, who I saw a lot of over the summer of 2008.
