The Skin
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
The skin is the largest organ in the body and is
affected in most scleroderma patients.
The exception to this rule is the limited subset version of scleroderma patients.
The exception to this rule is the limited subset version of scleroderma patients.
At the time of my diffuse scleroderma (dcSSc) diagnosis
in 1997, I presented with extremely tight skin across my chest, arms, hands,
face, legs … all over my body. My hands and fingers were puffy with tight,
itchy, shiny skin and painful joints.
I was unable to make a fist and could not remove bottle tops, the lids of jam jars, or the like, and had other symptoms (joint pain, gastro-intestinal, pain, lethargy, fatigue, and so on).
I was unable to make a fist and could not remove bottle tops, the lids of jam jars, or the like, and had other symptoms (joint pain, gastro-intestinal, pain, lethargy, fatigue, and so on).
After years of chemotherapy and immunsuppressants
— I am now 12 years cytotoxic drug free — my skin has reversed to 97%
normal healthy skin, according to my last medical assessment in May 2016, with
the dedicated scleroderma world expert Professor Chris Denton.
The Modified Rodnan Skin Score (mRSS) is the
standard measurement assessment test used to identify scleroderma skin
activity.
A skin score is important because:
- Skin
score often peaks within one year of dcSSc onset
- There is an association between severe skin involvement and burden of organ-based complications
- Death or major organ-based morbidity occurs in 50% of dcSSc cases within 3 years of disease onset
- Stabalization or improvement in skin sclerosis within 2 years of diagnosis may confound studies designed to prevent skin score worsening
- Latent Trajectory Modelling identifies distinct subgroups defined by skin score
To learn more about this, Click here
I have a daily symptom management routine
that includes bathing and moisturising my skin.
For the bath, I use liquid petroleum (Oilatum Plus) and then, after towel drying, I use Hydromol emollient cream all over my body.
For the bath, I use liquid petroleum (Oilatum Plus) and then, after towel drying, I use Hydromol emollient cream all over my body.
I use sensitive skin skincare laundry products and only wear clothing that is soft against my skin. Sadly, my Armani jeans have remained at the bottom of my wardrobe since diagnosis, as denim is too heavy against my skin, causing my inner Bond girl to go AWOL.
As with most things scleroderma-related, nothing is
that simple, and although I have regained the elasticity and texture of healthy
skin, I am challenged with skin-related symptoms caused by the scleroderma,
such as calcinosis, telangiectasia, Bowen’s disease, and a possible basal cell
carcinoma on my forehead.
The mystery of the calcinosis/basal cell carcinoma
(BCC) will be investigated in two weeks time, which I am trying to remain calm
about, having had a very impromptu, if brief, meltdown in a phone call with
the local dermatologist’s secretary to book the appointment last
week!
I had spoken with this secretary a few years ago, when this
calcinosis/BCC mystery commenced its journey, and she remembered me, so luckily
she understood that I was having an uncharacteristic, albeit embarrassing,
reaction, and she was most kind and supportive. I have already purchased the
chocolates to take to her on the appointment day!
I know that most of my fellow patients will wholly
understand my little blip when booking another medical appointment due to
another complication of scleroderma.
I also know that I am very blessed to have gotten to year 19 without a skin biopsy, and I am in awe of my fellow (much braver than I) patients, who have been subjected to skin biopsies when their skin is tight and inflamed.
I also know that I am very blessed to have gotten to year 19 without a skin biopsy, and I am in awe of my fellow (much braver than I) patients, who have been subjected to skin biopsies when their skin is tight and inflamed.
The small skin patch of Bowen’s on my left knee is
thought to have been caused by sun damage. I cannot stress enough how important
it is to wear sun protection, especially if you are taking — or have taken —
any of the chemotherapy and immunotherapy drugs widely used for scleroderma
symptom suppression.
I went into more detail about this in 'The Magic of Summer'.
I went into more detail about this in 'The Magic of Summer'.
As with the management of most of my Raynaud’s and
scleroderma symptoms – prevention is better than cure, since there is no cure.
So, I now avoid being in any direct sunlight in the
hope of preventing further unwanted scleroderma skin complications, as, I
want to feel good ~ 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
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 Skin
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
No comments:
Post a Comment