The
Scleroderma Olympian - Nicola Whitehill
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
Summer 2016 saw the Olympic games held in Rio de Janeiro with 206 nations participating. I have often likened my diffuse scleroderma experience / existence to being similar to that of an Olympian athlete, but without the athleticism and without any competition with anyone else.
The ‘gold medal’ being to feel
better, stop the progression of disease within my body, and return my body to
wellbeing. I am more than aware that the medical outlook and the textbooks give
my ‘gold medal’ vision a rather different outlook.
However, given that my
diagnosing Doctor gave me a 15month prognosis back in 1997, I am independent to
the ‘expected’ medical outlook of what symptoms my body should now be
displaying due to the time duration, and remind myself that I am not my body,
or a text book definition. Read more here
I have written about the importance of an early
diagnosis, here
The comparing of my
scleroderma experience to an Olympian lies in the forward planning and
preparation required to complete the most basic and simple of tasks, which are
my sporting events.
Along with a winner’s attitude where I want to feel good, and one day, be able to say ‘I used to have scleroderma’.
Along with a winner’s attitude where I want to feel good, and one day, be able to say ‘I used to have scleroderma’.
My main current scleroderma
health challenges, now, relate to my:
I have managed to control my
skin involvement to a tolerable manageable level by daily bathing in liquid
paraffin, followed by moisturising with a thick emollient.
I am delighted that my skin
has reversed back to normal skin by 95%.
I can stretch out my arms without any tightening to my chest.
At the height of my disease activity, this was impossible for me to do and was excruciatingly painful.
In 1999, I had a most unpleasant experience at a friend’s wedding reception when dancing in a circle whereby everyone was linking arms, and my tight skin made me unable to take part.
I can stretch out my arms without any tightening to my chest.
At the height of my disease activity, this was impossible for me to do and was excruciatingly painful.
In 1999, I had a most unpleasant experience at a friend’s wedding reception when dancing in a circle whereby everyone was linking arms, and my tight skin made me unable to take part.
 |
| Tri-colour change in my fingers during a Raynaud's episode - VERY PAINFUL, PREVENTION as there is no cure |
Now, my daily routine is dedicated to addressing my symptoms to make my day as easy as possible. My mermaid bathing routine not only helps my skin, but also, my swollen joints and circulation.
Due to me having little success with the medications used to treat Raynaud’s, I am always mindful to prevent a Raynaud’s attack in the first place.
For me, this is helped by a warm bath within an hour upon waking, otherwise it is likely that getting undressed to get into the bath will prompt a Raynaud’s attack.
Getting into the bath also
brings along challenges to a tin man body, requiring caution and alteration in
style. Sadly, my days of being similar to Daisy Duke getting in and out of her
car in the TV program The Dukes of Hazard, are a distant memory.
Whilst in the bath I will
drink my squeezed lemon and water which activates my gastro-intestinal system.
I have detailed my daily smoothie and juice ingredients, here
I have detailed my daily smoothie and juice ingredients, here
Although my skin has reversed
almost to healthy skin, it can sometimes itch and is very sensitive. This makes
for wearing tight clothes a ‘no go’, as well as, I can only wear certain
materials next to my skin.
I am no longer able to wear jeans as the denim is too harsh- even my soft Armani jeans, which have remained in the bottom of my wardrobe for too long….
I am no longer able to wear jeans as the denim is too harsh- even my soft Armani jeans, which have remained in the bottom of my wardrobe for too long….
I am not able to wear tights,
leggings or the like. Track suit / sweat pants are more comfortable, as well as
my pyjamas, which has to be my preferred choice of clothing.
I discussed more about the absconsion of my inner Bond Girl in my article 'The Magic of Summer'.
I discussed more about the absconsion of my inner Bond Girl in my article 'The Magic of Summer'.
The actual reality of getting
dressed is no longer the simple task which it used to be.
Buttons and zippers can bring along levels of frustration way disproportionate to their actual size.
I now remove this anger / patience trigger by buying and wearing clothes which are easy to put on and wear, with my fashionista pride pushed to the wayside.
Buttons and zippers can bring along levels of frustration way disproportionate to their actual size.
I now remove this anger / patience trigger by buying and wearing clothes which are easy to put on and wear, with my fashionista pride pushed to the wayside.
All in all, the entire routine
for me (my body), to be ready to be able to leave my front door with all
controllable symptoms at a tolerable level, takes me 3 hours upon waking.
I have tried to hone a quicker routine but my body dictates the pace, and usually feels as though it has been covered in barbed wire and dipped in concrete.
I have tried to hone a quicker routine but my body dictates the pace, and usually feels as though it has been covered in barbed wire and dipped in concrete.
Living with scleroderma has
made me have to be mindful of managing my time. Medical appointments take
priority in my diary, with me needing ‘rest’ days before and afterwards.
The ‘rest’ days must be interpreted as that- ‘rest days’ and not ‘being lazy days’, as ‘rest days’ are extremely important for the body to recover.
To read my article on 'Mobility', Click here
The ‘rest’ days must be interpreted as that- ‘rest days’ and not ‘being lazy days’, as ‘rest days’ are extremely important for the body to recover.
To read my article on 'Mobility', Click here
I have had to very much become
independent of the good opinion of others when it comes to ‘rest days’ and ‘not
getting dressed days.’
Especially whereby an observing person may think that they are trying to be helpful with their comments of ‘you have to push yourself’, when in actual fact, they have not got a clue and are in no place to be offering such judgements, since they are not living with my diagnosis.
Sadly, I have experienced this from fellow patients also. This is an important reminder that there are no two scleroderma patients who present with the exact same set of symptoms.
Especially whereby an observing person may think that they are trying to be helpful with their comments of ‘you have to push yourself’, when in actual fact, they have not got a clue and are in no place to be offering such judgements, since they are not living with my diagnosis.
Sadly, I have experienced this from fellow patients also. This is an important reminder that there are no two scleroderma patients who present with the exact same set of symptoms.
So, although there were no
sporting events in the Olympics which this scleroderma Raynaud’s patient could
actually take part, not even in the paralegal events, I was fixated to my TV
screen for the duration of the games.
The dedication and commitment
to make an Olympic athlete are most definitely the golden hallmarks of the long
term scleroderma survivor.
Along with attitude, which is everything, so pick a good one. I want to feel good.
Along with attitude, which is everything, so pick a good one. I want to feel good.
The pinnacle day of the
scleroderma patient’s year is most definitely 29th June World
Scleroderma Day. Read more, here
An edited version of this article was published here, in my Column with Scleroderma News.
August 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
Scleroderma Olympian - Nicola Whitehill
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
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