Vanessa
Cummings, UK.
June
Scleroderma Awareness Month 2018.
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.
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!
I
went away and called the Scleroderma helpline. I described my symptoms to Kim
Fligelstone. Kim 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.
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.
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.
June 2017.
2018 UPDATE
Current SYMPTOMS:
Fatigue
Fatigue
Recently
a lot of stomach discomfort including pain and nausea.
Very
sluggish digestive system including bloating, stomach discomfort, wind as well
as problems in passing motions freely.
Tightness
and swelling in hands.
Only 5% of the original tightness left but
still uncomfortable.
Dry skin.
Raynaud’s symptoms.
Sweating on even slight exertion.
Anxiety and inability to tolerate any stress.
I should say though, that I am actually very
happy and content. Not depressed.
Difficulty sleeping.
Dry eyes.
Much
less desire to socialise and interact with others.
Low libido.
Current
Medications:
Sildenafil 25mg twice a day. 1 in morning and 1 with
dinner (up until 2 days ago- I am testing out the cause of my horrible stomach
pains and think it lies here).
Fluoxetine 40mg (20mg x2) in morn.
Ramipril 2.5mg 1 with dinner.
Hydroxychloroquine 200mg with dinner.
Fibrogel 2 a day.
Laxido 2 a day.
Paracetamol 2x 500mg when needed.
Lanzoprazole 30mg 2 a day one morning, one at
8pm.
Ranitidene 300mg at 8pm.
Diphenhydramine 25 mg 1 at night.
Systane balance eye drops as needed.
Lacrilube eye ointment at night.
RESEARCH 2018
Have
you taken part in a research trial?
No.
If
no, please comment why….
I have never been asked.
IN BETWEEN MEDICAL APPOINTMENTS:
Huge
thanks go to Vanessa for sharing her scleroderma reality for Scleroderma Awareness Month.
To view my article 'Why Global Collaboration is Important', Click here
All patients included within the global patient profiles campaign, highlight the URGENT need for an investment in medical research, as well as:
ALL being, crucial factors for best practice management and care.
Raynaud's, Click here
Current Unmet Clinical Needs 2018:
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
GASTROINTESTINAL,
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
March 2018 Autoimmune
Disease Awareness Month, Click here
World Scleroderma Day
2017, 29th June, Click here
World Scleroderma Day
2016, 29th June. Origins of the date, Click 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 MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
I am immensely grateful to James Carver MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
To view the presentation, Click here
To view my article 'Why Global Collaboration is Important', Click here
All patients included within the global patient profiles campaign, highlight the URGENT need for an investment in medical research, as well as:
Early Diagnosis
Expert Specialist Centres
Access to innovative medicines
ALL being, crucial factors for best practice management and care.
To read my articles:
Raynaud's, Click here
This year, I am celebrating 20 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
 |
| Sept 2017 |
 |
| Prof Chris Denton and I, 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. Read more, here
For latest updates follow:
Facebook Page:
Twitter: @SclerodermaRF @RaynaudsRf
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#SclerodermaFreeWorld
#RaynaudsFreeWorld
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: June 2018
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