Welcome to my blog - I was diagnosed in 1997, and given a 15month prognosis. In 1998 I became a patient at the Scleroderma Unit, The Royal Free Hospital. The cause and cure to both Scleroderma and Raynaud's remain unknown. Please donate to help fund medical research where 100% of your donation will be used for research purposes only.
#SclerodermaFreeWorld #RaynaudsFreeWorld #RareDisease
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.
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.
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.
What are your 3 biggest
current challenges due to your diagnosis?
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.
have carpel tunnel syndrome which the Occupational Therapist has given me
foot is swollen, so I have to wear flat boots and fluffy socks. I am no longer
able to ‘dress up’ anymore.
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.
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
everything tiring and an effort to do anything, so I will put most things
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.
neuro-muscular pain makes it difficult for me to sleep, adding to my continual
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 wishes
for the future?
will be found SOON
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.
To read more about Sharon’s Scleroderma, Raynaud’s,
Autoimmune Rare Disease reality, Click here
To read my articles:
Rare Disease Day 2018, Research - Taking Part in
Clinical Trials, Click here
If we only had more RESEARCH investment for
Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
Scleroderma Awareness Month 2017 Patient Profiles
Campaign, Click here
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:
Expert Specialist Centres
Access to Innovative Medicines
Where MEDICAL RESEARCH investment
is the key. Abstracts from 2016 World Congress, Click here
Scleroderma Awareness Month Campaign 2016, Click here
The Family Day at the Scleroderma Unit, The Royal
Free Hospital is taking place on the 19th May 2018. Browse the
This year, I am celebrating 20 years of being a
patient at this 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,
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 -
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.