The
Magic of Summer - Nicola Whitehill
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
‘Now that the weather is better, you must be better’
This is a phrase which, if I
had a pound or a dollar for every time a person told me this, my fundraising efforts
for Prof Chris Denton’s research at the Scleroderma Unit at The Royal Free
Hospital would now have more than reached its target of a million, and the
cause and cure of scleroderma would have been discovered!
 |
| Thanks to the very creative Sharon Esposito for this image |
If you are living in the
northern hemisphere, you will currently, be experiencing the middle of summer,
and, conversely, if you are living in the southern hemisphere, you will
currently be going through the middle of winter.
Living here in the UK, I have
always looked forward to midsummer’s day, June 21st, the longest day
for hours of daylight in the northern hemisphere.
Sadly, an increase in daily
daylight hours combined with an increase in daily temperature, is not
sufficient to ‘cure’ the daily symptoms experienced by a scleroderma and Raynaud’s
patient. Well, not this patient, anyway.
However, the mid summer’s
combination is a more welcome combination compared to that which will be
experienced in six months’ time, with short dark days along with cold
temperatures.
The magic of summer brings along
a whole different set of symptoms for me, including over-heating, and swelling.
For the first seven years of
my diffuse scleroderma diagnosis, I took all of the chemotherapies and
immunosuppressants available.
This may make me sound similar to a ‘junkie’, but at this time, I was desperate for my body to respond positively to these disease modifying drugs, to prevent the final option which I was facing, and was actually on the waiting list for – a stem cell transplant.
This may make me sound similar to a ‘junkie’, but at this time, I was desperate for my body to respond positively to these disease modifying drugs, to prevent the final option which I was facing, and was actually on the waiting list for – a stem cell transplant.
Luckily for me, my body
responded to the five year 2g daily dose of mycophenolate, which I stopped in
March 2004 upon completing all of my study and training to become a qualified
barrister.
Although I am overjoyed to now
be immunosuppressant and chemotherapy free for 12 years, the sun, now brings
along an added complication for me, by increasing my risk to developing skin
cancer.
I already have a small patch of skin on my left knee which has been diagnosed as ‘Bowen’s’ disease, and which was responsive to topical treatment, but has subsequently reappeared.
I already have a small patch of skin on my left knee which has been diagnosed as ‘Bowen’s’ disease, and which was responsive to topical treatment, but has subsequently reappeared.
NHS England provides
the following helpful description of Bowen’s disease,
Bowen's
disease is a very early form of skin cancer that's easily treatable. The
main sign is a red, scaly patch on the skin.
It
affects the squamous cells – in the outermost layer of skin – and is sometimes referred
to as "squamous cell carcinoma in situ".
The
patch is usually very slow-growing, but if left untreated there's a small
chance it could turn into a more serious type of skin cancer.
To read more on this, Click here
I focussed on telangiectasia on DAY 27 Scleroderma Awareness Month 2016 Campaign.
 |
| Day 27 June Scleroderma Awareness Month 2016 - Telangiectasia |
The lump on my forehead which still remains questionable as to whether it is calcinosis or the makings of a basal cell carcinoma (BCC) also loves the sun by becoming bigger and redder upon sun exposure.
I focussed on calcinosis on DAY 19 Scleroderma Awareness Month 2016
BCCs are thought to be the
most frequently occurring form of skin cancer in the US, with or without the
added complication of scleroderma.
BCCs are
abnormal, uncontrolled growths or lesions that arise in the skin’s basal cells,
which line the deepest layer of the epidermis (the outermost layer of the
skin). BCCs often look like open sores, red patches, pink growths, shiny bumps,
or scars and are usually caused by a combination of cumulative and intense,
occasional sun exposure.
In an attempt to minimise any
further medical skin nightmares, I avoid going out in sunlight for the majority
of the day, on a sunny day.
I also make sure that my body is well covered by clothing, including my arms, which have developed ‘sun spots’ over the years, and I certainly do not want these becoming bigger due to further sun exposure.
I also make sure that my body is well covered by clothing, including my arms, which have developed ‘sun spots’ over the years, and I certainly do not want these becoming bigger due to further sun exposure.
I wear a baseball cap to
protect my face, along with big sunglasses and face cream with a high SPF (sun
protection factor).
I am not proud to be able to liken myself to a character from The Simpsons, (the guy with the long hair, baseball cap and glasses), with my ‘I have to avoid the sun’ look, and with my inner ‘Bond Girl’ having absconded in embarrassment.
I am not proud to be able to liken myself to a character from The Simpsons, (the guy with the long hair, baseball cap and glasses), with my ‘I have to avoid the sun’ look, and with my inner ‘Bond Girl’ having absconded in embarrassment.
This has required me to make
lifestyle choices which I would not have ordinarily made prior to diagnosis, as
I used to love sitting out in the sun. In 2003, I lived in Fuerteventura in the
Canary Islands for 5months, to see if the sun helped my symptoms.
My body has never been as pale
in colour as it is now, after a few years of avoiding the sun in an attempt to
minimise any further skin complications.
On the plus side, the warmer
temperature certainly makes my skin ‘softer’ and not as rigid / tight. I still
continue with my daily skin care routine by way of bathing in liquid paraffin
and moisturising with a thick emollient.
This routine having been in place for over a decade and contributing to my current 95% skin reversal to healthy normal skin.
This routine having been in place for over a decade and contributing to my current 95% skin reversal to healthy normal skin.
Over the more so recent years, overheating, (yes, you have read that correctly – overheating), has become a huge physical challenge for me, in the summer months.
My internal thermometer goes into overdrive, with a very small window of prior warning.
Should I become too hot, this
will result in excessive sweating all over my body, which can cause a rash on
my trunk.
The medical scleroderma genius Prof Chris Denton tells me, that this is due to an alteration in the skin make up further to scleroderma symptoms, with an alteration to the sweat glands.
I very much hope to raise sufficient funds to sponsor a research student for investigating this further, along with the painful enigma which is calcinosis.
The medical scleroderma genius Prof Chris Denton tells me, that this is due to an alteration in the skin make up further to scleroderma symptoms, with an alteration to the sweat glands.
I very much hope to raise sufficient funds to sponsor a research student for investigating this further, along with the painful enigma which is calcinosis.
If I have been too hot
throughout the day, later on, in bed at night time, I can experience intense
raynaud’s attacks whilst my body is trying to regulate itself.
This comprises of intense shivering and muscle spasm with my body turning rigid, and takes a while to regulate.
Clearly, this is a most unpleasant experience and extremely frightening, and so prevention of such is key and recommended.
This comprises of intense shivering and muscle spasm with my body turning rigid, and takes a while to regulate.
Clearly, this is a most unpleasant experience and extremely frightening, and so prevention of such is key and recommended.
I also find that my body
becomes more swollen in the warmer months of the year, and in particular my
joints, namely knees, ankles, elbows and hands.
This makes for wearing ‘feminine skimpy girly’ summer clothing a ‘no go’, when combined with the skin cancer risk element.
This makes for wearing ‘feminine skimpy girly’ summer clothing a ‘no go’, when combined with the skin cancer risk element.
Unfortunately, I am not able
to ditch the Uggs and gloves over the summer months. My raynuad’s involvement
is so sensitive that the smallest of breezes could be a trigger, regardless of
the temperature.
Living in Fuerteventura certainly eased my chronic pain and flexibility. However, everywhere was air conditioned, which although my internal sweating production appreciated this, my fingers and toes would be blue.
Living in Fuerteventura certainly eased my chronic pain and flexibility. However, everywhere was air conditioned, which although my internal sweating production appreciated this, my fingers and toes would be blue.
My awareness story in The
Daily Mail in 2013 features photos of me wearing my Uggs and gloves on the
hottest day of 2013.
 |
| Hottest day of 2013, wearing Ugg boots and gloves to prevent Raynaud's attack |
2016 Daily Mail update
One of my highlights to the
change in Solstice, (if not the ‘only’ highlight) is that I get together via Facebook
with my lovely friend and fellow Scleroderma Raynaud's patient Silvana Vidmar, who lives
in Australia. We make it our priority to exchange solstice greetings and tips
on how to get through the winter hibernation period for each other.
So although, the days are
longer and lighter, the plight of the scleroderma patient still continues with
a smorgasbord of summer symptoms to negotiate and manage.
Oh and did I mention sleep??
sleep in the summer, after a winter of hibernation, is a luxury.
Oh, for the magic of summer…..
 |
| Hottest day of 2013 wearing Ugg boots and Gloves to prevent Raynaud's attack |
Sadly, since this
article was published, Silvana passed away in July 2017.
Myself, her family
and friends remain broken hearted, however, know, that she is now,
scleroderma-free.
RIP Silvana, and Thank You for the beautiful memories and
laughter we shared.
My work / hobby will continue to be inspired by you.
#SclerodermaFreeWorld #RaynaudsFreeWorld
My work / hobby will continue to be inspired by you.
#SclerodermaFreeWorld #RaynaudsFreeWorld
An edited version of this article was published here, in my Column with Scleroderma News.
July 2016.
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
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt 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: 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
2018 Scleroderma Awareness Raising and Medical Research, Click here
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.
Read more, here.
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.
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
Please DONATE to help
fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.
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.
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.
provides the brightest light,
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:
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
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.
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.
Last Update: Feb 2020.
The
Magic of Summer - Nicola Whitehill
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
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