MY PERSONAL EXPERIENCE
SURVIVAL GUIDE FOR LIVING WITH
THE DIAGNOSIS OF
SCLERODERMA AND RAYNAUD’S
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
INTRODUCTION
Having been given the diagnosis at the age of
24 back in 1997, I hope to share some of the daily routines and tips which I
believe have not only stopped my scleroderma symptoms in their tracks but have
also reduced my Raynaud’s attacks and therefore improved my day to day living
on this roller coaster journey.
Although I am only on year 16 of living with my
body having been hijacked, I am 14 years past my initial diagnosis medical sell
by date.
Anyone with some awareness of this diagnosis
will be aware that it affects every part of the body – it is not fussy ! and it
certainly does not mess about!
A quick diagnosis upon the onset of initial
symptoms will most definitely work in the patient’s favour!
I was lucky in that, I was diagnosed within
months of the initial give away signs – namely,
puffy shiny fingers
with little strength,
as well as,
tightening of the skin
on my thighs, arms and trunk which was often very itchy,
difficulty in swallowing,
and,
a dry mouth.
Being the eternal optimist that I am, at that
time I spent a few months taking the immune-cytotoxic drugs, but my head was in
the sand, and ultimately I did not believe the medical expiry date which I had
been given – 15months, soon to have to use a wheelchair.
I was at that time on weekly appointments to
see the consultant at QMC, psyching myself up whilst travelling to the hospital
that it could not get much worse, surely?
With the news upon leaving the hospital, that
it had got worse and I was not responding to the medication.
So the dose would be increased and I would
literally spend the week ‘cooking’ with a mixture of pain, intense tiredness
and constant nausea.
At that time the range of drugs which I tried
included: Hydroxychloroquin, Tacrolimus, Cyclosporin, Methotrexate – none of
which, no matter how high the dose, stopped the scleroderma taking over.
By now my skin had become as hard as leather
and it was impossible to stretch my arms out or wear any clothing near my skin
as it would start the itching.
My fingers were extremely stiff and wanted to
curl in on themselves.
I had seen photos of hand involvement a few
years down the line, and thought ‘that’s not happening to me’ and so at all
times, I would try and stretch my fingers out whenever I could, and at night I
still sleep on my hands making my fingers lie flat.
I am unable to pick up some objects as well as
I cannot make a full fist with either hand.
I also find door handles / taps /coins/ holding
a pen very difficult and have learnt to adapt as much as I can.
By late 1998 my body had turned to stone even
though I was taking the medication.
I was advised to seek a second opinion at the
specialist clinic at The Royal Free Hospital headed at that time by Prof Black,
now Prof Denton.
Within seconds of the consultation, I knew that
these medical experts wanted to help me get better and help me achieve my dream
of being a barrister.
3 days before Christmas 1998, I was on a
cyclophosphamide infusion for 8 hours which was repeated a couple more times
with a few months time lapse in between each treatment.
I was then started on 2g Mycophenolate Mofetil
daily, which after 5 years was reduced with view to stopping.
By now I was a practising barrister on a 60
hour working week where weekends had been spent bonding with my sofa and bed to
ensure I had energy for the week.
Unfortunately by the end of 2004, although
cytotoxic medication free, the pain and lethargy took over, so I had to make
the big lifestyle decision of relocating to be nearer my family as well as give
up my job which I had so loved, but was not compatible with my symptoms.
Upon my return to Southport, I have dedicated
each day to respecting my symptoms as well as being dedicated to embarking upon
my return to well being.
My mantra for each day when beating myself up
about not being able to do my job or any job at the moment, is, ‘My job today
is to simply get better’.
I am particularly encouraged knowing that in
the 1920s an American non medic called Edgar Cayce was curing people from this
turning to stone disease, and he did not have any of the powerful
immunosuppressants available to him which are available today.
So there must be a cure out there… in the
meantime there are disease modifying agents available as well as symptomatic
treatments.
MEDICATIONS
For the scleroderma:
Hydroxychloroquin, Tacrolimus, Cyclosporin,
Methotrexate, iv Cyclophosphamide, Mycophenolate, Drug A – licensed for MS not
yet for scleroderma, Omeprazole, ALL pain killers, Amitryptiline, Gabapentin
and the like ! Co-proxamol being my painkiller of choice if I really cant cope
with the pain anymore !
For the Raynaud’s:
Ace inhibitors, Angiotensin inhibitors,
Iloprost, Viagra, Bosentan
For the infected ulcers and calcinosis:
Every antibiotic !
Flucloxacillin usually works, but I spent most
of last year on it, which gave me internal thrush including my mouth!
I would advise to get a swab of any infection
before starting any antibiotics so that you can ensure you are taking an
antibiotic which is specific for the microbe which is causing the infection.
SURVIVAL GUIDE
Due to scleroderma being systemic, it affects
everywhere in the body.
I am lucky in that I have minimal lung, heart
and kidney involvement.
I have annual tests on my heart and lungs as
well as monthly blood tests and 6monthly urine tests.
DIET
Due to swallowing difficulties as well as acid
and low gut motility, I have had to change my diet and only recently found a
positive solution.
Whilst I was on my 60hour working medley, I
would hardly eat anything during the week, to try and control the frequent
trips to the toilet.
I practically lived off Weetabix alone which
ultimately took its toll on my body.
I have also learnt through trial and error,
what the trigger foods for giving me acid are, and so avoid them, as well as I
try and make sure that I am eating at regular intervals.
Even if my stomach is telling me it is full
after the first mouthful I still persevere as food is so important to build
yourself up again.
For the first 9 years of my diagnosis I drank
alcohol, and this was a huge part of my social life.
However, since alcohol is a natural depressant,
my mind would not be particularly helpful when I had a hangover, which would
take days to clear out of my system and in the meantime intensifying the pain /
sickness and filling my head with thoughts of doom and gloom so I knocked the
booze on the head!
I will indulge in a glass of nice champagne now
if I have to, otherwise I will abstain on the alcohol.
Due to my not being able to eat a varied diet
or much for the first few years, my nutritional diet was very much non
existent.
As well as, I constantly felt bloated, and
lethargic as well as, I had a muffin top and one extra!
I was not overweight but I felt it!
So December 2012 I bought a juicer and followed
the Jason Vale juicemaster programme for the first 7 days to detox my body and
give it some full-on nutrition of vitamins and minerals, and because I felt so
good after the 7 days, I have continued to have 2 juices a day.
I have not felt this energetic throughout the
whole time of living with my body having been hijacked by scleroderma!
I have also cut out all caffeine from my diet.
When I look back to the initial 7 years,
caffeine played a huge part in my functioning.
I must have been putting huge stress on my
adrenal glands without realising!
I now start my day with the juice of half a
lemon and some warm boiled water, after the oil pulling.
I have had very few cravings for tea or coffee
and have not needed them as an energy booster as I have been controlling my
energy levels with my diet and juices.
Since I have cut out gluten / bread and
carbohydrates I have also seen a difference in my internal digestion.
I no longer have my ‘love handles’, as well as,
I do not feel as bloated and have more energy.
I have replaced dairy milk with almond milk on
my unsweetened Alpen and banana in the morning.
I do have dairy probiotic organic yogurt as
well as the odd kilo of milk chocolate and cakes!!
In essence I am eating a main meal of either
fresh salad or fresh steamed vegetables with a vegetarian option or fish.
I have cut out all meat as well!
I really did not believe I would be able to do
this but it has definitely helped my digestion.
I do not get as much acid as I used to, and
only keep the omeprazole handy as a stand-by as opposed to a twice a day
consumption.
Fried and processed foods are a no-go area
also!
I also follow the Ayurvedic (Eastern medicine)
process of oil pulling.
Upon waking I will swill a tablespoon of
sunflower oil around my mouth for 15 - 20 mins (if Im combining this with
meditating it will be for 20mins), and then spit it out.
This is meant to be a natural cleansing for the
mouth, as well as, it pulls out toxins through the tongue which are related to
the digestion, (well that’s my understanding anyway!)
I have been doing this for about the same time
as juicing, and again I have noticed an improvement, not just with my digestion
but also with my dry mouth and sensitive gums.
The two daily juices which I have are a Vit C
smoothie late morning and a supergreen power juice late afternoon.
For the Vit C smoothie:
I juice 1 orange (peeled), 2inch thick slice of
pineapple, ¼ grapefruit (peeled, I have read that grapefruit reduces calcinosis
!),
I then mix this juice with ½ a banana and 3
tablespoons of probiotic organic natural yogurt in the blender ~ lovely!
I sometimes add strawberries, blueberries and
raspberries in the juice part.
For the SuperGreen Juice:
I juice 2 golden and delicious apples, 2inch
thick slice of cucumber, ½ lime peeled, 1inch thick slice of pineapple.
I then add this juice to the blender with ice,
1 teaspoon of wheatgrass powder, 1 teaspoon of Spirulina, 1 probiotic capsule.
MY SKIN
I will start my day after oil pulling and
meditating, by getting in the bath.
I have had to alter my style for getting in and
out of the bath – my Daisy Duke days are well and truly over!
I bathe in liquid paraffin (Oilatum) which
hydrates my skin.
The temperature of the bath and bathroom have
to be quite warm with no draughts, as the smallest of change in temperature,
will set my Raynaud’s symptoms off.
The warm water helps to ease the constant
musculoskeletal pain which I have and helps my joints feel not as stiff.
If I have any ulcers or calcinosis lumps I try
and keep them dry which can be quite a challenge and so I have plastic gloves
at the ready!
After warming up a bit, I will then get dry and
moisturise my whole body with Hydromol.
I have tried all sorts of different creams and
have found that this works the best for me!
I am then ready to get my Eskimo outfit on!
I have had to wear track suit bottoms for the
last few years as I have very painful calcium lumps on my knees which hurt
more, on the slightest touch contact.
I have not been able to wear denim for at least
6 years as it is too harsh against my skin.
So, sadly, my Armani jeans have had to be
pushed to the back of the wardrobe!
MY HANDS
Since day 1 of the diagnosis, (by then, my
fingers were very stiff), I have tried to straighten my fingers at every
opportunity, by laying them flat and stretching them.
I have tried hand wax baths which did relieve
the joint pain a little but my fingertips are too sensitive for the temperature
of the melted wax!
As well as, with open wounds such as an ulcer,
melted wax on the damaged tissue is quite painful.
The skin on my fingers is similar to tissue
paper and I try to protect them by wearing gloves most of the time.
I have scarring on my index finger first joint
bends from calcinosis.
As well as, I have scarring on most of my
finger tips from ulcers and calcinosis.
Fortunately, my nails have not been affected
too much, other than a ‘hoof like’, looking little finger and some extra ridges
on all of my nails.
I have found that an increase in my mineral and
vitamin intake has also strengthened my nails as well as made my hair a bit
thicker and shinier!
I am unable to make a fist with either hand and
have very little grip as well as tend to drop things quite easily.
As well as, picking up small objects is a
difficulty and buttons and zips are a no go!
Holding a pen is an art, and is very painful.
I therefore try and minimise my frustration
with my hands and focus on the things that I can do, whilst actively avoiding
the things which will be more difficult for me.
Putting my hand in the fridge to take food out,
will be sufficient to set off the Raynaud’s blueness.
I have to let the food stand to room
temperature before I can handle it!
Chopping and peeling is also a no go!
For most of the year, apart from the summer
months, I have a huge bond with my microwave as I have to use a microwavable
handwarmer to keep my hands warm and therefore prevent any ulcers settling in.
I am unable to hold a knife and fork in the
traditional way, and have to use a sharp kitchen knife to even attempt cutting
anything!
If I am at a restaurant I will ask for a steak
knife and try and make some joke about having special needs!
Even then, I may struggle to grip the knife if
it is not thick enough!
In which case I will ask someone to cut my food
up for me!
MY FEET
For the last 6 years or so I have worn Ugg
boots all year round.
These not only keep my feet warm, as my feet
are as sensitive as my hands to the slightest temperature change thus turning
blue, and therefore a great environment for an ulcer to develop, but the Uggs
also provide some support to my ankles as I never know with each step when
walking whether my ankles or knees will give way!
I have not been able to wear shoes for years,
as my feet hurt too much.
I often wake up with throbbing feet!
I have had ulcers and calcinosis on my toes
which are extremely painful, and until I experienced these ulcers, I did not
realise how much our toes help us balance!
I now try and prevent any ulcer formation by
keeping my feet and toes as warm as possible – I still dream about wearing my
pink sparkly flip flops again though!
MY STOMACH / TOILET ACTIVITY
Having had years of antibiotics following on
from the immunosuppressants, my internal digestion was in a state of disarray!
I could not eat most foods as they would be an
acid trigger as well as my digestion was not functioning properly due to the
scleroderma.
I would often have pains in my stomach
throughout the day and would certainly start the first few hours of the day
holding on to my stomach due to the pain.
I had an endoscopy and a barium pancake meal to
conclude that my stomach lining was more than inflamed!
I also had no appetite and even if I had the
best menu possible available to me I would not find anything appetising.
I was a waste of time at restaurants as I would
only be able to handle a couple of mouthfuls and then I would be full.
This stomach pain would be accompanied with
regular trips to the toilet which brought its own problems!
Further to changing my diet in December 2012, I
have been able to monitor these problems a bit better.
And for the first time in years I am producing
solid waste!
As well as, my appetite has increased, less
stomach pain, and I am able to digest food better.
I still have to have the omeprazole handy, but
I have not had to rely on it as much as I used to, since changing my diet.
PAIN
This has to be one of the biggest challenges
this diagnosis brings.
I can not remember when I was last pain free.
I have tried all painkillers including the
morphine based ones, which are great at knocking the pain out but also knocked
me out along with projectile vomiting!
I now try and manage the pain with resting up,
before and after, things I have to do eg. medical appointments.
I then go on a day to day basis, and if it is I
am having a particularly trying day with the pain I will have to go to bed to
lie down, and hope that by taking more rest the pain will have eased tomorrow.
There is not one joint in my body which does
not ache, and this gets progressively worse throughout the course of the day.
I am very reluctant to commit to evening
pastimes or activities as I find it too difficult to move with the stiffness.
My back, in particular is painful, making
standing and sitting not very comfortable!
I do not go to the theatre or cinema very often
anymore, as it is not very enjoyable being sat in one position for so long with
the pain.
As well as, when I get up, I am like the
hunchback of notre dame! As, it takes me a few minutes to straighten out!
I have an electrically operated massage cushion
which I sometimes use on my back, but I find it too hard / intense as my back
is very sensitive with the pain!
SLEEP
I have learnt over the years the importance of
sleep, when dealing with this diagnosis.
I am disciplined in that I make sure I have at
least 8 hours of lying horizontal each night, as otherwise trying to move
around the next day will be more painful and difficult.
As well as, if I am tired I am not as patient
with my symptoms, which is not a helpful way for me to go about my day.
When I first get into bed I have to lie on my
back with my legs up at my knees, and then I gradually straighten my legs out.
Again, this is due to the pain in my back.
It is very difficult to sleep when you are in
pain, especially when you wake up every time you turn over due to the pain.
In the initial years, I tried Amitryptilline to
help with my sleep, but I found the side effects outweighed the sleep aspect,
so I stopped them.
I have tried Gabapentin and Lyrica but had a
similar experience in that, the side effects of feeling knocked out for the
first few hours on waking outweighed the sleep benefit aspect.
I now try to only go to bed when I am tired,
and associate my bed with a place of rest as opposed to watching tv or reading
in bed etc.
As well as, I will try and avoid sleeping
during the day so as not to disrupt sleeping at night.
I found that when I was sleeping / napping
during the day, having had a sleepless painful night, the night before, I was
not able to sleep the following night, and so my sleep pattern was all over the
show, making me very tired and feeling down, viewing the smallest of tasks as
huge effort and not getting on top of the pain.
The last 15 minutes before you go to sleep are
very important as to what your subconscious processes during sleep, so I am
mindful to make sure that my thoughts are positive at this time, focussing on
the things that I CAN do, and what makes me feel good!
MOUTH
I use sunflower oil every morning to rinse my
mouth, I will later on brush my teeth with toothpaste!
Since I have been making this part of my daily
practice, I have noticed that my mouth doesn’t seem to be as dry, but I always
have a glass or bottle of water nearby or with me throughout the day and night.
Unfortunately in February 2013 I had to have a
tooth removed on my lower jaw due to an abscess which was contributing to the
continual pain I have on the right side of my face up to my ear.
I have noticed that my teeth are a lot more
sensitive over the years, as well as, my gums feel different sometimes.
Which of course, would make sense as
scleroderma is systemic and so, affects anywhere where the blood goes to.
My mouth is constantly dry and so, I have water
with me at all times.
Unfortunately, I am unable to hold a
toothbrush, I have to wrap a towel around the handle and so, I have limited
control of the brush.
I have three monthly appointments with my
dental hygienist who is very patient with me when I can not hold my mouth open
for very long.
Being a professional advocate, my mouth and
voice are my tools of my trade so I have been disciplined with doing regular
mouth and facial exercises, as well as, some days rest my voice by not talking
to anyone! As, my vocal box has been weakened along the process.
I sometimes find it difficult to speak softly,
or very loudly!
However I am sure that most of my friends and
family would disagree with this haha!
I have noticed more so recently that, my jaw
will lock mid sentence!
My lips have become quite thin, with my upper
lip having become non existent!
As well as, I have the tell tale scleroderma
lines around my mouth!
I try and keep my lips moisturised as much as
possible and have resigned myself to accepting that I no longer have a trout
pout!
EARS
I am particularly sensitive to the wind and
have to wear ear muffs, even on a summers day, if it is windy.
My right ear is painful all of the time, going down
my jaw line, so I try and keep it warm as much as possible.
CALCINOSIS
These random lumps of calcium appeared after
about 5 years of diagnosis.
They are extremely painful, and take a long
time to heal, which usually means months of antibiotic use for me as they
always become infected.
I have calcinosis scars on my elbows, knees,
bridge of my nose (that one really hurt!), fingers and toes.
I have taken a 6week course of minocycline to
see if that helped reduce the calcinosis as well as heal any current lumps, but
I was not so convinced it helped.
I juice a quarter of a grapefruit in my morning
vitamin c smoothie as I have read that grapefruit reduces calcinosis, however I
am yet to formulate my own view on this!
If anything, I try and prevent their occurrence
by way of protecting my skin as much as possible, as they seem to form at
trauma sites, or pressure points.
I have recently met with the tissue viability
nurse at my local hospital who has suggested Duoderm extra thin dressing for my
ulcers and calcinosis.
So far this has provided some pain relief on my
ulcers and helped a huge calcium lump come out of my 4th finger tip!
TELANGIECTASIA
I have had these red spots on my face for the
last 6 years.
I haven’t as yet found the formula for sorting
these.
I use Estee Lauder products on my face and have
found that one of their creams has made the red spots a little less bright!
I am aware that there is a surgical procedure
which burns them away, but I have not got the courage to go and have this done!
I do try and cover them with make up.
FAULTY INTERNAL THERMOMETER
I find wearing lots of layers helps with this,
as it is easier to remove a layer if I become too hot, rather than become too
cold.
However, I can overheat which usually requires
me to have to change my top as I have been sweating so much, although my hands
can be ice cold and blue, at the same time!
I also have to be aware of the temperature of
any room when I am removing any clothing as this can start a Raynaud’s attack
if the temperature is too cold!
I have to keep my bathroom draught free whilst
I am doing my daily mermaid routine!
I have to remove food from the fridge at least
30mins before I can start to prepare it, as otherwise it is too cold for me to
handle.
HAVE A DREAM
I really believe that my studying for my law
degree and qualifying as a practising barrister really kept my mind from going
off onto wild imaginings of its own, in relation to the fatal part of my having
this illness.
Thereby, I did not allow my mind to spend too
much time on the prognosis of my diagnosis.
I used to visualise myself in my wig and gown,
feeling well.
This vision was especially prevalent when I was
lying having the iv infusions of cyclophosphamide at the end of 1999 and during
the year 2000!
Unfortunately, the scleroderma and Raynaud’s
did not totally clear off once I achieved my dream of being a barrister, so I
now have to make some new dreams, one of which is helping in the discovery of
finding a cure for this nightmare illness and putting it in to the extinct rare
disease category of the medical textbook.
This diagnosis has put me on a different path
to one that I had envisaged for myself, however, I am more than grateful that I
have limited involvement of my internal organs, other than my stomach.
I am also extremely grateful for the wonderful
multidisciplinary medical team I have around me, headed up by the wonderful
Prof Denton.
This gives me huge comfort especially on the
moreso difficult days inbetween appointments.
It gives me huge joy and encouragement to see
Prof Denton become so excited with my progress every 6months, especially when
he assesses my skin score!
I have almost reversed the symptoms with my
skin.
However, I know that there is no magic pill to
eliminate the diagnosis and so, I try and take as much responsibility as I can
by way of having a strict disciplined routine, in helping the medics eliminate
my symptoms and return me on the path to well being.
I believe that ‘attitude is everything and so
pick a good one’!
It would be very easy to sit and drink vodka
day in and day out to block out the pain!
However that would be the short term easiest
solution! with no long term, other than make the symptoms far worse!
One of the huge mental challenges for me with
this illness is my becoming a hermit in the winter months.
As well as, having to dress like a sumo
wrestler Eskimo for most of the year.
I therefore try and fill my time with various
distractions which make me feel good (no alcohol).
Ranging from editing friends books to then go
on and self publish, as well as knitting teddies for South African orphans, and
baking cupcakes for the local soup kitchen.
I also sit on a few local government council
groups in relation to disability as well as I had a stint of being an education
presenter for the RNLI, but unfortunately, anyone with this diagnosis will
understand that it is difficult to commit to appointments when you do not feel
very well.
I am particularly grateful to Anne Mawdsley and
the Raynaud’s and Scleroderma Association, for their continual support and
tireless fundraising in finding a cure, and raising awareness.
I am a huge fan of Louise Hay and her work
including her book ‘You can Heal your Life’ as well as her free online radio
station hayhouseradio.com.
I am particularly inspired by Louise as she
healed her body from cancer and set up her business when she was 60!
One of my other gurus is Dr Wayne Dyer who has
a radio show on hayhouseradio and he reminds that The Bible tells me that, I am
not defined by my body or an illness – my spirit defines who I am!
I started a blog last autumn, to share any
material which I came across which particularly resonated with me in helping me
through the Scleroderma and Raynaud’s induced, that felt like, ‘dark, bleak
tunnel with no light at the end days.’
I really believe that it is so important to
keep your inner dialogue as positive as possible when dealing with the day to
day symptoms this diagnosis presents.
Doing things that make you feel good have to be
a great antidote, or as in my case when I spent the best part of 6months on my
back on my sofa, I watched comedy dvds back to back!
I know both series of Peter Kaye’s Phoenix
Nights verbatim!
Please do not be mistaken, I have never totally
accepted this diagnosis, and there is not a day which goes by that I do not
wish I was well again.
It has taken me 16 years to openly share my
story, with the intention / hope of helping others!
I now look at my disease from a different
perspective, as, ‘when you change the way you look at things, the things you
look at change.’ – that’s one of my favourite Dr Wayne Dyer quotes!
All in all, I can only:
share my experience,
which may be very different to another patient’s journey,
and,
share my coping tips
which may or may not work for someone else.
I have done this with love in my heart and the
hope in finding a cure for a return to well being for all Scleroderma and
Raynaud’s patients.
This article was written for the Raynaud’s and
Scleroderma Association Autumn Newsletter 27th September 2013
PLEASE DONATE to the ROYAL FREE CHARITY, to
help fund desperately needed MEDICAL RESEARCH at the SCLERODERMA UNIT, THE
ROYAL FREE NHS HOSPITAL.
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
#Autoimmune #RareDisease #LifeChanging
Scleroderma Family Day
2020
25th
Anniversary Meeting
The Atrium, Royal Free
Hospital, London, NW3 2QG
Chair: Professor Chris
Denton
PROVISIONAL PROGRAMME
09.30 – 10.00 Registration
and Coffee
10.00 – 10.20 Welcome Dame
Carol Black
Prof Chris Denton &
David Abraham
10.20 – 10.40 What
is a Biopsy? Dr Kristina Clark
10.40 – 11.05 Dental
aspects of Scleroderma Prof Stephen Porter
11.05 – 11.25 Gastrointestinal
problems – Dr Fiza
Ahmed
shedding
new light on old problems
11.25 – 11.50 Pulmonary
hypertension and the heart Dr Gerry
Coghlan
11.50 – 12.15 Scleroderma
cohort studies – Dr
Francesco
‘Learning
from our patients’ del Galdo
12.15 – 14.15 LUNCH
BREAK – see below
14.15 – 14.45 25
years of progress – Prof
Chris Denton
from
‘black box’ to ‘positive trials’
14.45 – 15.15 International
speaker – Dr
Madelon Vonk
Scleroderma
Management in Netherlands
15.30 Raffle
Lunchtime Discussions Groups /
Demonstrations include:
Clinical Trials Rachel
Ochiel and team
National Institute of Health Research Christine Menzies
Drug Information / monitoring Pharmacy
Massage Keith Hunt MBE
Pulmonary Hypertension Education / nursing Sally
Reddecliffe/Adele Dawson
Rheumatology Laboratory Research
Laboratory Staff
Scleroderma Education / Nursing Louise
Parker/ Joseph Cainap
Thermography Dr Kevin Howell
SRUK Ollie Scott
Sjogren’s syndrome British
Sjogren’s Society
To Read My Articles:
Gift in My Will, Click here
Planning for the Future, Click here
Rare Disease Day:
Rare Disease Day 2020:
Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here
Rare Disease Day 2020:
Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here
Rare Disease Day 2019: Leaving a Legacy Gift, Click here
Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here
Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
Rare
Disease Day is a fantastic opportunity for the entire rare disease
community to shine a spotlight on their reality, combining as one unified
voice. Where, at least one commonality presides –
Medical
Research
provides
the brightest light,
for the illumination of
the rare disease patients’ plight.
for the illumination of
the rare disease patients’ plight.
Although
rare disease patients are few in number, eg. 2.5 million scleroderma patients
worldwide, (the World Scleroderma Foundation), the commonalities and golden
hallmark for each rare disease patient are the same overall.
For optimum
patient care, 3 hallmarks preside: 
INVESTMENT in MEDICAL RESEARCH is CRUCIAL.
To read my articles:
Celebrating 20 years of being a patient at the Scleroderma Unit, Click here
2019 New Challenges, Click here
NIHR Video: 'My
Experience of Clinical Trials', Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
2018 Scleroderma Awareness Raising and Medical Research, Click here
SCLERODERMA:
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
 |
| Sept 2017 |
 |
| Prof Chris Denton and I, Sept 2017 |
 |
| June 2019 |
 |
This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
I am eternally grateful to the global scleroderma trail blazers Dame
Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking
the scleroderma enigma, is nothing other than, superhuman. Along with the
Raynaud's world trail blazer, Dr Kevin Howell.
I am truly humbled and inspired by their work ethic and commitment to
their patients.
I am wholly appreciative for Prof Denton’s continued medical expertise
and support, especially during my barrister qualifying years, 1997 -
2004.
1st March 2004, I qualified as a self employed practising
barrister. Further to having been told in 1997, by my original diagnosing doctor, that I
was looking at a 15month prognosis.
 |
| Chat Magazine May 2019 |
I very much hope to utilise my professional skills
and qualifications along with my patient experience, to help achieve the
#SclerodermaFreeWorld dream, hoping to improve understanding and best practice,
in the meantime. Read more, here
World Scleroderma Day
2015, 29th June.
 |
| James Carver, myself, Prof Chris Denton |
I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.
I am immensely grateful to James Carver, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
To view the presentation, Click here
Raynaud's:
October:
Raynaud's, Click here
 |
| The global Raynaud's trailblazer - Dr Howell and I, Sept 2017 |
For latest updates follow / subscribe:
@SclerodermaRF
@RaynaudsRf
@SclerodermaRF
@RaynaudsRf
Twitter, Instagram, Blogger, YouTube, Facebook Page:
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
MY PERSONAL EXPERIENCE
SURVIVAL GUIDE FOR LIVING WITH
THE DIAGNOSIS OF
SCLERODERMA AND RAYNAUD’S
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
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