Sarah
Lloyd, UK.
June
Scleroderma Awareness Month 2018.
Raynaud’s, Autoimmune Rare Disease.
 |
| Sarah Lloyd, diffuse scleroderma patient, UK |
Name:
Sarah Lloyd
Location:
Shaftesbury, North
Dorset, UK
Diagnosis: Raynaud's, MCTD, Systemic Sclerosis
Year of
diagnosis:
Raynaud's & MCTD
- Feb 1992
Systemic Sclerosis -
Sept 2015
Age at diagnosis:
Raynaud's & MCTD
- 26,
Systemic Sclerosis -
49
Where / who
diagnosed you?
The Royal Free
Hospital: Raynaud's & MCTD - Dame Carol Black & Prof. Chris Denton.
Systemic Sclerosis -
Prof. Chris Denton.
What were your
presenting symptoms?
Circulation cut off / blue fingers.
Constipation, GERD.
Ulcerating fingers.
Swollen hands.
Thickening & hardening
of the skin over the body.
How long did it take
for you to be diagnosed after first symptoms?
A Week? It was a
long time ago!
Current reality.
Slow recovery from Systemic Sclerosis as a result of stem cell transplant.
Still have
antibodies for both MCTD and Systemic Sclerosis in my blood.
Still have severe
Raynaud's.
Still have GERD.
Please describe your
current symptom involvement and management, including any treatments taking and
taken:
I still have
thickened skin on my face.
With the exception
of my hands, the rest of the skin on my body is becoming looser.
I have one finger
ulcer which has been troubling for two years.
No new finger ulcers
though.
Hands have
deteriorated since the transplant, with more thickened skin, stiff joints and
curled fingers.
Management: Lots of
moisturiser, hand exercises -massage, manipulation, putty etc.
Raynaud's managed by
keeping warm.
Medication:
Omeprasol, MMF,
Bosentan, Fluoxetine, Hydroxychloroquine, Clarithromycin, Ranitidine,
Montelukast, Prednisolone, Calcite, Vitamins various.
What are your 3
biggest current challenges due to your diagnosis?
Inability to make my
hands work due to tightened skin, shortened tendons / curled fingers and my
digital ulcer.
Inability to put
gloves on due to misshapen hands.
Inability to go
outside for long due to Raynaud's.
What are your 3 top
tips for living with your diagnosis?
Keep warm!
Keep exercising and
stretching your hands.
Be careful of what
you eat - nothing too acidic that will promote GERD.
What are your 3
wishes for the future?
One wish only: to
have my hands back!
June 2017.
2018 UPDATE
I am nearly two years post Stem Cell Transplant for Diffuse Systemic
Sclerosis.
My treatment has definitely stopped the progression of the disease.
I could not walk more than 20m pre-transplant and my skin score was
42/51.
Now my skin score is around 8.
My digestion is much improved and my overall ability to do things is
better.
I still have thick skin in my face.
The biggest thing though, I am afraid, is that my hand function is a lot
worse.
Although my skin has loosened up to my wrists, it is still very tight
and constrictive in my hands, and my finger contractures have increased a lot -
despite exercising and massaging every day.
I use only my thumbs and index fingers to make things happen.
CURRENT SYMPTOMS
Scleroderma - Finger contractures.
Thickness of skin in hands and face.
Raynaud’s.
GERD.
Current Medications:
Omeprazole, MMF, Prednisolone, Bosentan, Clarithromycin,
Hydroxychloroquine Sulphate, Calcichew, Fluoxetine, Montelukast, Ranitidine
RESEARCH 2018
Have you taken part in a research trial?
Yes
How many trials?
Several - I am afraid I can’t remember.
My first one was Prof Denton’s Heparin trial abut 25 years ago!
I am currently taking part in an online SPIN trial.
Did you have to travel far?
From Dorset to the Royal Free is 2.5-3 hours.
Would you advise others to take part in research trials?
Definitely yes.
The more research that can be done to find a cure for this disease, the
better.
The trials can provide benefits for many, not just few.
Big Thanks go to
Sarah, for sharing her scleroderma and Raynaud's
experience for Scleroderma Awareness Month. And, huge thanks for the use of Sarah's hand image to highlight the 'Sclerodactyl, Clinical Unmet Need'.
IN BETWEEN MEDICAL APPOINTMENTS:
Since transplant, my medical appointments were every three months
(Haematology & Rheumatology) and are now going down to six, which is good.
The contractures on my hands have, unfortunately, got worse. So I
exercise them a lot, using putty and stress balls to try and stretch them out.
My husband massages and manipulates them for two hours a day, without
fail, just to try and get them to be more flexible.
The fact that my hands seize up so easily means I am still limited in
what I can do. I can drive, but not too far. I can lift light things for
cooking (one plate at a time etc) and I can do laundry. Ironing is a no-go
(neither is knitting!).
The warm weather naturally makes them more flexible but the cooler
weather is a nightmare; they just seize up, which is frustrating for doing any
kind of admin or for going out.
I can walk and I do as much walking as I can, as long as I am wrapped up
warm.
In the meantime, I look after the household and am doing what I can for
my daughter in terms of preparing for university / conservatoire in Sept 2019.
To read Prof Chris
Denton’s presentation at the annual Scleroderma Family Day 2017, ‘Having a stem
cell transplant: Patient and Doctor Perspective’, featuring Sarah, 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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