Raynauds Scleroderma Global Patients: The Raynaud's Scleroderma, Autoimmune Rare Disease, Olympian

The Scleroderma Olympian - Nicola Whitehill

Scleroderma, Raynaud's, Autoimmune Rare Disease.

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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’.

My main current scleroderma health challenges, now, relate to my:

musculoskeletal 'tin man' symptoms,

mobility

fatigue

pain and hair loss

gastro-intestinal-tract

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.

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 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'.

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.

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.

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

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.

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.

The pinnacle day of the scleroderma patient’s year is most definitely 29^th 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

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.

Read more, here.

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.

1^st 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 2018, Click here

World Scleroderma Day 2017, 29th June, Click here

World Scleroderma Day 2016, 29th June. Origins of the date, Click 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

To view the UK treatment guidelines for Raynaud’s Phenomenon, Click here

To view the EULAR treatment guidelines, Click here

To view Thermograph Video, Click here

To view Thermograph image, Click here

My Raynaud’s reality, Click here

The global Raynaud's trailblazer - Dr Howell and I, Sept 2017

To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here

Invisible Disability Awareness Video, Click here

To read My ‘Invisible Disability’ experience, Click here

50 Shades of Blue, Click here

For latest updates follow / subscribe:

@SclerodermaRF

@RaynaudsRf

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Raynauds Scleroderma Awareness Global Patients

#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