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
Friday, 2 June 2017
Why Research and Patient Profiles? Scleroderma Awareness Month 2017, Raynaud's, Rare Autoimmune Disease
1st June, saw the
start of Scleroderma Awareness Month, with the 29th, being World
Further to this year’s RareDiseaseDay
2017 theme being ‘Research – With Research Possibilities are Limitless’, I have
made ‘Research’ the theme of my Scleroderma Awareness Month 2017 Campaign,
along with patient profiles.
To read my articles for Rare Disease Day 2017, 'Medical Research and its importance' Click here , and my article, 'Clinical Unmet Needs for the Raynaud's Scleroderma patient', Click here
In this article, I intend on
discussing the importance of research, combined with a global collaborative
approach. As well as, how raising scleroderma awareness during June, can
maximise the potential of the cause and cure of this rare disease being
discovered, in our lifetime.
I discussed more about how
research provides immense hope to the scleroderma Raynaud’s rare disease
patient in my last article about the importance of scleroderma awareness month,
This autumn marks my 20th
anniversary of living with the disease.
Upon my initial diagnosis, in 1997,
aged 24, I was given a prognosis of 15 months. Click
At that time, I was working as
a medical representative for Bristol Myers Squibb, as well as, studying on a
part time distance learning basis to achieve my dream to become a barrister.
I consider myself to be an
extremely ‘lucky’ scleroderma Raynaud’s patient, in that, I have minimal
internal organ damage. I contribute this to the excellent care which I received
from having attended the Scleroderma Unit at the Royal Free Hospital, London,
Within 30 seconds of my appointment with Dame Professor Carol
Black, I knew that she would use all of her medical expertise to help me get
better and realise my dream.
Several years of intense
chemotherapy infusions combined with the immuno-suppressant, mycophenolate,
eventually stabalised what was a very aggressive diffuse form of the disease. I
was also on the stem cell transplant waiting list.
By now, my hero, Professor
Chris Denton had become my lead Doctor, and to whom I am eternally grateful to,
and will forever remain so. His dedication and commitment to his patients and
the scleroderma Raynaud’s global community is superhuman.
Prof Denton helped me realise
my dream. 1st March 2004 I qualified as a self employed practising
barrister in my own right. Sadly, if you have followed my blog, you will know
that my ‘tin man’ body due to the damage from scleroderma, combined with my
extreme Raynaud’s sensitivity, makes being ‘under house arrest’, my optimum
symptom management location, and the internet my lifeline.
I therefore feel ‘lucky’ that
I had, in effect, an early diagnosis whereby treatments still remained an
option to me. Even though managing my symptoms, (the damage to my body caused
by the scleroderma), makes for a full time job. Any spare energy or time which
I have, is dedicated to the scleroderma Raynaud’s cause.
To read my article ‘Ah
great, another day to spend in bed, said no scleroderma Raynaud’s rare disease
patient’, Click here
I have a new dream now – a
Scleroderma Free World, and a Raynaud’s Free World.
I very much hope that this
dream becomes a reality in my lifetime. I believe that it will, upon investment
and global collaboration in research, not just for scleroderma but for the
autoimmune diseases as a whole.
Further to my personal
experience, and my new dream, I am passionate that a scleroderma Raynaud’s
diagnosis is not subject to a postcode / ZIP / Country lottery, as to best
practice and care for the patient.
Along with, expert specialist
centres being essential, and medical research being a priority. The Scleroderma
Unit at the Royal Free Hospital is the national scleroderma clinical trials
centre, Click here
Due to scleroderma being a
rare disease, and therefore having low patient numbers, clinical trial
recruitment is a challenge. It is difficult to obtain clinically sound,
scientific statistically significant data, with only a small population
eligible to take part. This is why global collaboration is crucial for the
sharing of best practice for the scleroderma Raynaud’s patient.
Taking part in a clinical
trial is an opportunity to have access to the most advanced potential
therapies. Read more about my clinical trial experience here
During the lead up to June, I
contacted several patients from around the globe, asking for them to complete a
short questionnaire. I designed the questionnaire to highlight the global
diagnostic approach, as well as, treatment for the global scleroderma Raynaud’s
patient, and how their experience could be improved.
I am truly humbled to all
those who took part and thank each and every patient who shared their reality,
to help put the spotlight on this life changing, if not life threatening, rare
Follow the campaign at
Scleroderma News, as well as, my Raynauds Scleroderma Awareness Global Patients