Sharon
Harris, UK.
Scleroderma Awareness Month 2018.
Raynaud's, Autoimmune Rare Disease.
 |
| Sharon Harris, UK |
Name:
Sharon Harris
Location:
Chorley, England, UK
Diagnosis:
Scleroderma,
Raynaud’s, Arthralgia, Calcinosis, Telangiectasia, Epilepsy
Year of
diagnosis: Raynaud’s, 2012
Scleroderma, August 2016
Where / who
diagnosed you?
Dr Samaranyake,
Consultant Rheumatologist, Preston
What were your presenting
symptoms?
I had ulcers on my
little finger, so my GP gave me chilblain cream.
I returned some
weeks later, still with the ulcers as well as joint stiffness and tiredness all
of the time.
I knew something was
not right. The GP then referred to me the specialist, Dr Sam.
Dr Sam told me that
I had systemic scleroderma and how did I feel about this. I did not really know
what it was, and cracked and broke down.
I rang my mum and
told her that this was serious.
I was devastated for
a good 2 weeks. I cried every day and still do, as I feel I have a very bleak
future ahead of me.
2017 reality:
Since being
diagnosed, it has affected me emotionally, psychologically, and made me short
tempered. I am also experiencing the menopause, so I am constantly hot and
cold.
I will not let it
beat me or stop me going out to do things, but I have to spend days in bed
after doing anything.
My mum bought me a
dinner service for Christmas, which I have dropped half of, already!
I can not take
antidepressants due to my epilepsy medication.
I have lost 4 stones
in weight since last August, as I am unable to eat most things and bring food
back up. This is gradually improving with diet changes.
My side hurts all of
the time with scleroderma pain, as well as my chest bone and my bones.
I moisturise my skin
daily, but have tight skin on my legs and arms.
My legs and arms
feel heavy, as though I am walking with a person on me all of the time.
I wish I could do
more, but I have hardly any energy. It takes me much longer to do things eg.
Cleaning and simple tasks.
I have ulcers and
calcinosis which are extremely painful.
2017 SYMPTOMS:
I am currently taking medication for epilepsy, nothing for the
scleroderma. I am due to see the scleroderma specialist again in
August.
I take Losartan for my Raynaud’s. I have been offered Iloprost but am
hesitant due to the side effects.
I take thyroxine for my underactive thyroid and digoxin for my
heart.
What are your 3 biggest current challenges due to your diagnosis?
My hands are so swollen
that I can not grip anything or make a fist. My finger tips are very sensitive
and painful with ulcers and calcinosis.
I also have carpel tunnel syndrome which the Occupational Therapist has
given me straps for.
My right foot is swollen, so I have to wear flat boots and fluffy socks.
I am no longer able to ‘dress up’ anymore.
I feel restricted and have to wear gloves all of the time. I can not
write or sign my signature anymore.
I use a sponge adaptation on pens, to help me hold the pen, as I can not
grip it.
I have adaptations in the kitchen for tins and bottles.
I have a raised toilet seat, as well as hand rails and a walking stick
to help me move about.
I find everything tiring and an effort to do anything, so I will put
most things off.
I am limited to a weekly shop with my mum. If I make the effort for
special occasions, I will suffer for days afterwards.
I feel as though I am moaning all of the time and so I stay away from
socialising as I do not want to get into conversations, as I am in too much
pain.
The constant neuro-muscular pain makes it difficult for me to sleep,
adding to my continual tiredness.
I also worry about the impact that this disease is having on my mum and
son, as I do not want to cause upset to my family.
What are your 3 top tips for
living with your diagnosis?
Make the necessary adaptations.
Go one day at a time.
Rest, if you have to.
What are your 3 wishes for
the future?
A cure will be found SOON.
I wish all fellow patients well. I have found great support in the
social media groups and have been encouraged by other patients’ stories.
I have a sparkling future ahead, with my lovely little dog, Mackey, and
my family.
June 2017.
June 2017.
2018 UPDATE:
Current SYMPTOMS:
My symptoms are still the same, but have settled a little.
I have stopped taking a few of the medications, and now take Sildenafil
for my circulation. The initial side effects of sweats, headaches and nausea
have settled.
I am not sleeping as well as I used to and have frequent insomnia.
I recently had a cardiovascular operation which has been successful.
RESEARCH 2018:
I not taken part in any research trials- I have not been asked to.
IN BETWEEN MEDICAL APPOINTMENTS:
I have been forced to change my lifestyle due to my symptoms. I do not
go out as often as I used to, but I am trying to go out a little more.
I have recently started to go to the gym, to help build up muscle around
my knees and hips. I use power lifts weights to try and improve my stamina.
I enjoy spending time with my family, friends and Mackey.
Huge thanks go to Sharon for sharing her scleroderma reality and experience in such detail, for Scleroderma Awareness Month.
Sharon’s initial
symptoms sound very similar to my initial experience.
To view the NHS England, Digital Ulcer Management Guidelines, Click here
To read my articles:
Current Unmet Clinical Needs 2018, Click here
CALCINOSIS, Click here
GUM RECESSION, TOOTH
EXTRACTS, Click here
SOFT TISSUE, ULCERS,
Click here
TELANGIECTASIA,
Click here
SCLERODACTYL HANDS,
Click here
INVISIBLE
DISABILITY, Click here
RAYNAUD'S, 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. |
'Scleroderma
Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click here
Global Patient
Profiles Campaign Index, Click here
Importance of Medical
Research and Awareness Raising, Click here
NIHR Video: 'My
Experience of Clinical Trials', Click here
Week 3, 2017 Patient
Profiles: Medical areas of current interest, Click here
Week 2, 2017 Patient
Profiles: Progress in Medical Research, Click here
Week 1, 2017 Patient
Profiles: Introduction to multi complex disease, Click here
Why I chose global
Patient Profiles for my 2017 / 2018 Campaign, Click here
2017 Global Patient
Profiles Campaign Introduction, Click here
'Being your own
awareness advocate', Click here
Scleroderma Awareness
Month Flashback 2017, Click here
Scleroderma Awareness
Month Flashback 2016, Click here
My 2016 Campaign, A
to Z: Scleroderma and Raynaud's diagnosis, Click here
2016 Campaign Video, Click
here
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.
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
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