TELANGIECTASIA – Unmet Clinical Need
Scleroderma Awareness Month, June 2018
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
Telangiectasia are another
symptom of Scleroderma, which although, not life threatening as such, can be
extremely distressing to the patient, due to the change in appearance of the
skin.
As can be seen in the above
image, my face has taken on its own dot to dot puzzle which has emerged over
the course of the last ten years.
I also have telangiectasia covering my trunk and the palm of my hands.
I also have telangiectasia covering my trunk and the palm of my hands.
Currently telangiectasia are
another unmet need of the scleroderma patient.
There is no adequate treatment, and relatively little is known about their cause.
Laser therapy can be used as a temporary removal measure, however, the red dots will eventually re-apppear, on a patient specific basis.
The red dots are more unsightly, as opposed to being painful. However, telangiectasia can lead to internal bleeding, and so, they can not be underestimated as to their seriousness.
There is no adequate treatment, and relatively little is known about their cause.
Laser therapy can be used as a temporary removal measure, however, the red dots will eventually re-apppear, on a patient specific basis.
The red dots are more unsightly, as opposed to being painful. However, telangiectasia can lead to internal bleeding, and so, they can not be underestimated as to their seriousness.
As with all of the Scleroderma
Awareness Month posts, it is important to note that no two scleroderma
patients will present with the exact same set of symptoms.
Some scleroderma patients will not present with any telangiectasia symptoms.
Some scleroderma patients will not present with any telangiectasia symptoms.
 |
| Thanks to UK patient, Alex Marler, for sharing her chest for this image |
I focussed on the
ACR / EULAR classification guidelines for a scleroderma diagnosis on DAY 6 Scleroderma Awareness Month 2016.
An edited version of this article was published here, in my Column with Scleroderma News,
June 2016.
 |
| 18.9.18 |
More Current Unmet Clinical Needs:
CALCINOSIS, Click here
GUM RECESSION, TOOTH
EXTRACTS, Click here
SOFT TISSUE, ULCERS,
Click here
SCLERODACTYL HANDS,
Click here
INVISIBLE
DISABILITY, Click here
RAYNAUD'S, Click here
GASTROINTESTINAL, Click here
To Read My Articles:
'Scleroderma Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click here
 |
| Prof Chris Denton presenting a plaque to Kevin's daughter, Michelle, and wife, Debby, for funds raised in Kevin's memory for medical research at the Unit. Thanks to Michelle for the photo. |
Why I chose global
Patient Profiles for my 2017 / 2018 Campaign, Click here
2017 Global Patient
Profiles Campaign Introduction, Click here
An edited version of this article was published here, in my Column with Scleroderma News.
June 2018.
An edited version of this article was published here, in my Column with Scleroderma News.
June 2018.
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
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 |
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TELANGIECTASIA – Unmet Clinical Need
Scleroderma Awareness Month, June 2018
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
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