Vanessa
Cummings, UK
Patient
Profiles DAY 8
June
Scleroderma Awareness Month 2017
Raynaud's,
Autoimmune Rare Disease
 |
| Vanessa Cummings, UK |
Name:
Vanessa Cummings
Location:
Teddington, Middlesex
Diagnosis:
Diffuse systemic Scleroderma
Year
of diagnosis: 2009
Age
at diagnosis: 54
Where/who
diagnosed you?
Rheumatologist
at West Middlesex hospital. Incorrectly, diagnosed with limited Scleroderma at
first.
Presenting
symptoms:
New
Raynaud's symptoms which had not been present before
Pins and needles in arms
Swollen and itching hands which were quickly tightening
Overall chilliness
Strange cottage cheese texture in under arms
Aching and painful joints
Pins and needles in arms
Swollen and itching hands which were quickly tightening
Overall chilliness
Strange cottage cheese texture in under arms
Aching and painful joints
How
long did it take to be diagnosed?
Several
visits to the GP who was completely flummoxed. I requested referral to
rheumatology as I suspected rheumatoid arthritis from which my mother suffered
very badly.
I
paid to see the rheumatologist privately at West Middlesex as it was taking so
long to get a referral.
After various tests and paying for three visits he diagnosed limited Scleroderma and told me that it would have little to no effect on my life!
After various tests and paying for three visits he diagnosed limited Scleroderma and told me that it would have little to no effect on my life!
I
went away and called the Scleroderma helpline. I described my symptoms to Kim
Fligelstone. Who said that she thought I had diffuse Scleroderma.
I read up on the Internet and was very shocked and surprised. I went to my GP and asked for a referral to the Royal Free hospital.
I read up on the Internet and was very shocked and surprised. I went to my GP and asked for a referral to the Royal Free hospital.
The
GP was at first reluctant but I insisted. It took some months to get to the
Royal Free and I was very worried. When I did see the team they confirmed
diffuse systemic Scleroderma.
I
later developed breast cancer, one year later, which Prof Chris Denton said may
have coincided with the onset of my symptoms.
After mastectomy and chemotherapy my skin symptoms worsened drastically and my skin was completely solid, extremely painful and very itchy.
After mastectomy and chemotherapy my skin symptoms worsened drastically and my skin was completely solid, extremely painful and very itchy.
About
4 to 5 years after onset my skin began to soften.
All
the way, through the illness, I have been rigorous with exercise and
stretching. I believe this has really helped my skin. I apply oil liberally to
my body. I also juice fresh vegetables daily.
Current
symptoms:
GERD
for which I take lansoprazole and ranitidine
Extreme
sluggishness of bowels for which I take fibrogel movicol lactulose and Senna
Excessive
wind and flatulence for which I do nothing
I
believe my skin is tightening again slowly. I take hydroxychloroquine
I
have tinnitus. I am low on energy sometimes, but not as much as I could be
My
mouth is shrinking
I
have illoprost 3 monthly. I have asked if I can stretch this to 4 monthly. I do
not have ulcers and I do a lot of hand exercises
I'm
a poor sleeper. I take diphenhydramine at night to help. I try to avoid
painkillers but usually take two paracetamol at night
When
my skin was at its worst I was taking codeine, tramadol, amitriptyline and
paracetamol all at the same time!
My
3 biggest current challenges:
Lethargy
Re-tightening
of hands and arms
Dryness
of eyes and skin
Three
top tips for living with Scleroderma:
Positive
outlook
Exercise
and stretching– Even when it's the last thing I want to do. I believe this is
why I have greater flexibility and mobility than many
Taking
personal responsibility. Very important indeed with a condition like this
Three
wishes for the future:
A
cure for scleroderma
Huge
thanks go to Vanessa for sharing her scleroderma reality for
#SclerodermaAwareness
month.
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
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, 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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