Sharon
Harris, UK
Patient
Profiles DAY 24
June
Scleroderma Awareness Month 2017
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.
Current 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.
Please describe your
current symptom involvement and management, including any treatments taking and
taken.
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?
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 also 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
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 more about why I chose ‘Patient Profiling and
Research’ as the focus of my 2017 campaign, Click here
Why Research and Patient Profiles? Scleroderma Awareness
Month 2017, Raynaud's, Rare Autoimmune Disease, Click here
INDEX to Scleroderma
Awareness 2016 Campaign, Click here
June 2016.
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Pandora’s Box of the rare autoimmune disease
Scleroderma, Raynaud's and Cancer, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
RARE DISEASE DAY:
Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
2016 Rare Disease Day Patient Voice
2016 Rare Disease Day Patient Voice
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.
I
highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017.
VIDEO
VIDEO
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:
Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines
Where MEDICAL RESEARCH investment
is VITAL.
Research
is the key. Abstracts from 2016 World Congress, Click here
The Family Day at the Scleroderma Unit, The Royal
Free Hospital is taking place on the 19th May 2018. Browse the
program, here
This year, I am celebrating 20 years of being a
patient at this world leading expert specialist research centre.
 |
| Sept 2017 |
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.
I am truly humbled and inspired by their work
ethic. 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
diagnosing doctor, that I was looking at a 15month prognosis.
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.
For latest updates follow:
Facebook Page:
Twitter: @SclerodermaRF @RaynaudsRf
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#SclerodermaFreeWorld
#RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease
Living the dream, scleroderma style.
Please DONATE to help
fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.
100% of your monies will be used for medical
research purposes only. No wages or admin costs. Thank You.
#HOPE
Last Update: April 2018
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