SclerodermaRF

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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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.

www.raynauds.org.uk

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.’

cosmicfairy444.blogspot.co.uk

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

25^th 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

Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here

Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click 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

2017 Rare Disease Day Medical Research

2017 Rare Disease Day unmet clinical needs to the scleroderma patient

2016 Rare Disease Day Patient Voice

2016 Rare Disease UK Parliamentary Reception

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.

To read about medical research at the scleroderma unit, Click here

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:

Early diagnosis

Expert specialist centers

Access to innovative medicines

supported by a medical ‘dream team’

(expert specialist as the clinical lead).

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

2018 Scleroderma Awareness Raising and Medical Research, Click here

SCLERODERMA:

Importance of an early diagnosis, Click here

Taking Part in Clinical Research Trials, Click here

The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here

Expert Specialist Centres, Click here

My Skin is Cured from Scleroderma, Click here

UK Guidelines for Managing and Treating Scleroderma, Click here

Fatigue, Click here

Mobility, Click here

Diet and nutrition, Click here

Raynaud's- How to Diagnose, Click here

'All you need to know', 2016 Awareness Video, Click here

Global Patient Profiles 2018 Video, Click here

Unmet Medical Needs, Click here

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.