
The
Scleroderma Olympian - Nicola Whitehill
Raynaud's
Scleroderma, Autoimmune Rare Disease

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 excrutiatingly 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.
At the height of my disease activity, this was impossible for me to do and was excrutiatingly 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.

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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
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.
To read my articles:

Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here

The Pandora’s Box of the rare autoimmune disease
Scleroderma, Raynaud's and Cancer, Click here


World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here

RARE DISEASE DAY:
Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
2016 Rare Disease Day Patient Voice
2016 Rare Disease Day Patient Voice


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.
I
highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017.
VIDEO
VIDEO

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:
Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines
Where MEDICAL RESEARCH investment
is VITAL.
Research
is the key. Abstracts from 2016 World Congress, Click here


The Family Day at the Scleroderma Unit, The Royal
Free Hospital is taking place on the 19th May 2018. Browse the
program, here
This year, I am celebrating 20 years of being a
patient at this world leading expert specialist research centre.
Sept 2017 |
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.
I am truly humbled and inspired by their work
ethic. 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
diagnosing doctor, that I was looking at a 15month prognosis.
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.
For latest updates follow:

Facebook Page:
Twitter: @SclerodermaRF @RaynaudsRf
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#SclerodermaFreeWorld
#RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease
Living the dream, scleroderma style.

Please DONATE to help
fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.

100% of your monies will be used for medical
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#HOPE



Last Update: April 2018
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