SclerodermaRF: Annual Monitoring Tests, Check-Up, 'MOT' - Nicola Whitehill. Scleroderma, Raynaud’s, Autoimmune Rare Disease

Annual Monitoring Tests, Check Up, ‘MOT’ - Nicola Whitehill

Scleroderma, Raynaud's, Autoimmune Rare Disease.

www.justgiving.com/fundraising/sclerodermaunit-royalfree

#RaynaudsFreeWorld #SclerodermaFreeWorld

blog.raynaudsscleroderma.co.uk

My diary is kept quite busy with medical appointments, which over the years, has steadied in frequency due to my symptoms being managed and controlled better.

However, should I have a flare with my symptoms, then obviously more medical appointments will follow.

I am extremely grateful for my medical care team, headed up by the Scleroderma trail blazer, super human and world expert Prof Denton.

Due to the complexity of scleroderma, the medical team required for optimum care is quite large with all of the differing medical care specialities involved.

I went in to more detail about this on Day 30 Scleroderma Awareness month 2016.

Day 3 focusses on the body parts which can be affected, as well as, some of the 'invisible symptoms'.

Day 5 provided information about the diagnostic tests carried out to confirm a scleroderma diagnosis and identify the level if any, of internal organ involvement.

I know that I am an extremely blessed and lucky diffuse scleroderma patient by way of me having minimal internal organ involvement. My skin, musculo-skeletal and gastro-intestinal system remain as my biggest challenges.

I wrote more about my ‘tin-man’ symptoms, here

In 2004, I had an endoscopy to assess the damage caused by scleroderma, to my stomach and oesophagus, with the results not making for a pleasant image, as my stomach lining was bright red.

I have also taken part in eating a barium radioactive meal to assess my stomach emptying, which showed a decrease in motility. I have not repeated these tests since.

I mistakenly opted out of the sedation offered for the endoscopy, in the hope that I would be able to return to work the following day (I was able to work in my dream job, a barrister, back then).

How optimistic and wrong I was! I had to take 4 days off work, which was of extreme inconvenience at the time, as my work diary had been booked for weeks’ in advance and taking days off from court at the last minute, caused all sorts of problems!

I wrote about how I control my gastro-intestinal issues, here and here

My scleroderma disease progress level is monitored by medical appointments at the Scleroderma Unit at The Royal Free Hospital in London, as well as, at my local hospital Southport and Ormskirk District General where I see the lovely Dr Sykes, Consultant Rheumatologist, and her awesome rheumatology team.

I wrote about the importance of expert scleroderma specialist centres, here

I wrote about the importance of an early diagnosis, here

In July 2016 I attended my local hospital for my annual lung and heart test.

My heart test included an ECG (Electrocardiogram) where the electricity or signalling of my heart was tested. Sticky pads were put on my chest and back, which were then wired up to a machine which investigates the electric signalling of the heart.

Obviously, all clothing from waist level up has to be removed for this procedure, which can bring about a Raynaud’s attack if the room is too cool or if there is a draught.

The removal of the sticky pads on my skin, is quite painful at the end of the procedure. I have a similar experience with plasters / elastobands, and will most often choose to not use them on my skin.

I wrote about my skin sensitivity Day 10

After the ECG, an ECHO procedure is carried out.

This requires lying on your back leaning slightly on the left side. Again, this procedure requires no clothing from the waist up, which may induce a Raynuad’s attack.

Day 7

Echo machine

The above image shows the equipment used to carry out this investigatory test for the heart.

This is an ECHO machine which requires a trained technician to operate properly. Mark, was my technician last time, and to whom I am grateful for his patience, as the body position required to gain the best ECHO results, I find to be quite uncomfortable.

A plastic microphone looking object is used to scan the left side of the chest.

This is covered in petroleum jelly to allow the electric signal to be conveyed to the machine, which displays an image of your heart on the screen, and luckily my mine was beating satisfactorily with minimum fibrosis and scarring.

My next test was to investigate my lungs, which requires another specific apparatus designed for all aspects of the lungs including gaseous exchange and full lung capacity.

Lung Function Testing Equipment

Rachael was my technician for the day, and to whom, like Mark, I am grateful for her patience, whilst I took my time through the tests.

I have been having my annual MOT at my local hospital, here in Southport, for over a decade now.

I am extremely grateful to Rachael, Mark and the rest of the team, for making these tests as easy, comfortable and patient focussed as possible.

This has helped make this annual scleroderma chore into a more social pleasant experience, as I enjoy seeing the staff and the chat!

And, funnily enough, Rachel had seen me out and about on my electric scooter walking my brown dog Daisy, with my white dog, Mitzy sat on my knee, the week before!

I wrote about my mobility challenges a few months ago, Click here

The lung test takes about 20 minutes in total. At the end of which, I was delighted to see that my lung test results had improved slightly from last year. I did not ask for the exact result, as I was so overjoyed that an improvement was seen.

Over the years, I have learnt to not be dictated to by results, but by, how I am feeling, and, I want to feel good.

I certainly feel awesome knowing that my 2016 heart and lung tests have returned a satisfactory result - another year to get on and enjoy myself, with the tin man body being the focus to exterminate, for a return to wellbeing.

In my article ‘The Scleroderma Olympian’, I compare the time, effort, dedication and commitment to being the best athlete, with the desire to have a scleroderma-free body. The annual MOT tests are all part and parcel of this scleroderma Olympian’s preparation. Oh to be fit, healthy and strong again.

Living the dream – scleroderma style.

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