Seasonal Change: Autumn
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
Most / ALL scleroderma patients will experience Raynaud’s, the narrowing of blood vessels, as a secondary symptom.
Raynaud’s can sometimes present as the diagnosing feature of scleroderma, however, this was not the case for me.
Tight puffy fingers and intense lethargy along with difficulty in swallowing were my initial symptoms. See more, here
The 1st September
is recognised as the change in season, as by, the meterological calendar. Here
in the northern hemisphere the season has now changed to autumn, with spring
having arrived in the southern hemisphere.
Even though the warmer summer
months bring along a marginal easing in some of my scleroderma and raynaud’s
symptoms, combined with additional ‘summer symptom’ emergence, my heart still
stinks somewhat at the thought of returning to the ‘eskimo months’.
I use this term, as I spend
the colder seasons wearing clothes similar to an eskimo.
Wearing so many clothes- I have more layers than an onion, with my inner Bond Girl, vanished into oblivion!
Wearing so many clothes- I have more layers than an onion, with my inner Bond Girl, vanished into oblivion!
I am, however, delighted for
my southern hemisphere fellow patients, that they can now start to emerge from
their winter hibernation, and in particular, my brave scleroderma patient
friend Silvana!
I wrote about ‘The Magic of Summer’, including the added extra scleroderma symptoms seen with an increase
in the weather temperature.
I also discussed in detail the
dedication and commitment required, to attempt to keep symptoms at a manageable
level in 'The Scleroderma Olympian'.
One of my biggest health challenges currently, is the management of my Raynaud’s involvement.
I see colour changes in various body parts should I experience the smallest change in temperature, including my nose, ears, hands, and toes.
I see colour changes in various body parts should I experience the smallest change in temperature, including my nose, ears, hands, and toes.
The wind can also trigger a
Raynaud’s attack for me, as well as, cause severe ear ache which goes all of
the way down my jaw line.
I have a selection of hats, scarves, balaclavas and gloves in an attempt to minimise any potential Raynaud’s trigger by way of the weather.
I wear gloves and Ugg boots all year round.
I have a selection of hats, scarves, balaclavas and gloves in an attempt to minimise any potential Raynaud’s trigger by way of the weather.
I wear gloves and Ugg boots all year round.
The most sensible solution for
me, is to remain indoors as much as possible.
Thereby, avoiding any triggers, by remaining in a cosy, expensive centrally heated environment. This is my reality.
Even indoors, I can experience a Raynaud’s attack by going into a different room which may be a slightly lower temperature.
Thereby, avoiding any triggers, by remaining in a cosy, expensive centrally heated environment. This is my reality.
Even indoors, I can experience a Raynaud’s attack by going into a different room which may be a slightly lower temperature.
In 2003, I lived in
Fuerteventura in the Canary Islands, for five months, to investigate if a
warmer temperature and climate would help improve my symptoms.
Which they did, but unfortunately, most places were air conditioned, which makes for a Raynaud’s playground!
Which they did, but unfortunately, most places were air conditioned, which makes for a Raynaud’s playground!
When preparing food which has
required prior re-fridgeration, I will remove the food from the chiller and
then leave it on the counter for ten minutes or so, to remove the ‘straight out
of the fridge’ chill factor.
I am unable to hold anything
which has come straight out of the fridge, as this would induce a Raynaud’s
attack in my fingers.
I am not able to hold a glass which has ice in it, although, I do make an exception for a champagne glass filled with Laurent Perrier Rose champagne!
I am not able to hold a glass which has ice in it, although, I do make an exception for a champagne glass filled with Laurent Perrier Rose champagne!
As well as the Management of
Raynaud’s and the differing treatment options used here in the UK. Click here
For scleroderma patients, it
really is advisable to try and be at the top of your game in relation to
Raynaud’s management, as the loss of blood to the extremities during an episode
can make scleroderma skin, prone to digital ulcers.
The pain of digital ulcers and
their management should be made into an Olympic event for the scleroderma
Olympian, as there are no words to describe accurately (even for a
professionally qualified advocate such as myself!), the excruciatingly painful
experience, that digital ulcers bring.
Thankfully, due to diligent
discipline on my part combined with bosentan 125mg twice a day, continuously
since October 2012, I no longer experience digital ulcers with the frequency
and severity which I used to.
Believe me, the experience makes you want to make sure, that you do not make yourself susceptible to ulcer heaven / personal nightmare. See Day 9
Believe me, the experience makes you want to make sure, that you do not make yourself susceptible to ulcer heaven / personal nightmare. See Day 9
One of the few highlights of
my scleroderma and raynaud’s patient experience has been to be a member of the medical team who compiled the NHS England guidelines for the management of digital
ulcers. See more, here
Sadly, there is currently no
cure for either Raynaud’s or scleroderma.
The treatment options target symptom suppression only, as the cause still remains a scientific mystery.
Although, stress is recognised as an inducer of Raynaud’s.
The treatment options target symptom suppression only, as the cause still remains a scientific mystery.
Although, stress is recognised as an inducer of Raynaud’s.
To view:
the UKSSG management of digital ischaemia in scleroderma, Click here
the UKSSG Management of Raynaud’s
in scleroderma, Click here
The fact that Raynaud’s can be
seen in other autoimmune conditions, as well as present on its own in patients
with no autoimmune involvement, shows that its commonality can be maximised for
global research investment and improved treatments, for all of the affected
patient populations.
Being house bound due to
severe Raynaud’s, is certainly no easy feat for the scleroderma Olympian.
……Living the dream, scleroderma style, hoping for a cure soon.
 |
| The hottest day of 2013, wearing Ugg boots and gloves to minimise Raynaud's attack - Nicola Whitehill |
An edited version of this article was published here, in my Column with Scleroderma News.
September 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.
Seasonal Change: Autumn
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
No comments:
Post a Comment