Deani
Baillie, UK.
Scleroderma Awareness Month 2018.
Raynaud's, Autoimmune Rare Disease.
 |
| Deani Baillie, UK |
Name: Deani Baillie
Location: Luton, Bedforshire, UK
Diagnosis: Limited Cutaneous Systemic
Sclerosis
Year of diagnosis: 2017
Age at diagnosis: 47
Where / who
diagnosed you?
Dr Mittal, Stanmore
RNOH, Confirmed by Professor Denton, Royal Free
What were your
presenting symptoms?
Ischaemic fingers,
leading to ulceration and gangrene.
Swelling, stiffness
and pain in the fingers, toes, hands and face.
Puffy red skin.
Telangiectasia.
Shortness of breath.
Fatigue.
Calcinosis.
Raynaud’s.
How long did it take
for you to be diagnosed after your first symptoms?
The past 9 months
have been some of the toughest I have faced in my life. After spending a week
in hospital after a shoulder operation and an allergic reaction, I left
bruised, swollen and resembling a car accident victim.
My fingers were
constantly blue/ black and I had MRI, CT angiogram and Doppler scans of my
brachial plexus, to rule out major vascular damage.
I saw a vascular
surgeon who dismissed it as ‘just one of those things’!
During a follow up
from my Orthopaedic surgeon, we discussed her concerns for my hand as by this
stage the pain was excruciating and movement becoming limited.
She sent a referral
to one of the Rheumatologist’s in the hospital due to her
concerns.
I saw a Vascular Surgeon as a private patient who did ultrasound and ordered bloods.
My first step to
moving closer to what would become an unknown rollercoaster ride.
These bloods came
back ANA and numerous other positives and he suggested that the Royal Free
Scleroderma Unit would be the best possible place to be seen.
Whilst awaiting an
appointment for the Rheumatologist my index finger, as I know now, had become
necrotic, and even though I knew in my heart it wasn't right, because there was
no suggestion of any problem from the clinicians, I just put up with the pain
and awaited my appointment.
Unfortunately, the
pain became too much to bare, and my finger was oozing black blood. I ended up
at Accident and Emergency.
This was the start
of my understanding of just how little is known, and understood about this
disease, outside of specialist centres.
I am extremely
positive by nature but the following months of what has become a living
nightmare is still strongly felt today.
I have been shouted
at, made to phone hospitals for information on what the clinicians should do,
told that they ‘have never seen this before’, and they just know, ‘there is no
cure’.
I was told that I
had CRPS, by one Rheumatologist. Also, that I would ‘loose my fingers’, by a
vascular surgeon, and made to feel like I am a huge problem with my medical
symptoms.
I could go on, there
are so many other frightening, painful and lingering experiences – all of which
I am trying to forget.
After seeking advice from others who have great understanding of Scleroderma, I am finally starting to put these behind me.
Without the support
and information along the way, I don't know how I would have come out the other
end. Thank You Nicola, a true inspiration to all!
Numerous drugs trialled and 3 courses of Iloprost later, I am now on a path filled with positive people, knowledgeable clinicians, and my heart even though I can't say the same for my body, is ready to tackle whatever is thrown my way.
I know now, I will do all I can, to help minimise, the impact and negative experiences other may face when trying to come to a diagnosis.
I am now under the care of the Scleroderma Unit at The Royal Free Hospital, where I can honestly say, my experience has been completely different! A huge positive..
At my initial
appointment I saw Professor Denton, and his team, an experience I can only say
was first class!
I had bloods taken,
thermography of my ‘good hand’ and Cappillaroscopy.
I was started on
Slidenafil and more Iloprost organised.
The specialist nurse was very informative and I left feeling that my rollercoaster was on the way up!
Next week, I return
for another five days of Iloprost. At least I can say I am not dreading
stepping foot in the Royal Free hospital, Scleroderma Unit.
Current
reality 2017:
I am currently still
suffering, after 8 months, with digital ulcers and gangrene in my
fingertips.
I have had three
infusions of Iloprost within the last 5 months and numerous medications to help
with increasing the circulation, but unfortunately, I have suffered allergic
reactions to these.
For the past four
weeks, I have been taking Slidenafil 3 times a day, and am due to receive
another five day course of Iloprost at the Royal Free next week, an
experience I'm sure will be completely different to the harrowing experiences
which I have had in the last few months.
I feel extremely
fortunate throughout my limited experience of lcSsc, to have been referred by
my Rheumatologist to the Royal Free, where I have been treated with the
utmost care, respect and can say I am now filled with positivity.
I am truly grateful
to be able to experience being treated by leading clinicians in the
field.
What are your 3
biggest current challenges due to your diagnosis?
Digital Ulcers.
Gangrene.
Breathlessness.
What are your 3 top tips for
living with your diagnosis?
Mindfulness and positivity are a
must!
Referral to a specialist centre
where people understand, is in my eyes, crucial!
Keep warm, gloves, base layers,
heat holder socks and Ugg boots.
What are your 3 wishes for the
future?
A cure for scleroderma.
Better understanding, care and
treatment for patients with Scleroderma from local hospitals and GPs.
More people to become a voice for
Scleroderma awareness and be able to support and help others through this
unknown rollercoaster ride.
Big thanks go to Deani for
sharing her diagnostic experience.
Please send your prayers and
thoughts to Deani as she is currently undergoing Iloprost treatment at the
Scleroderma Unit, The Royal Free Hospital.
Digital ulcers used to be my
nemesis until I started taking Bosentan 125mg twice a day. Words can not
describe how excrutiatingly painful, digital ulcers are.
In 2015, I was honoured to be part of the medical team who devised the NHS Guidelines for treatment of digital ulcers in Systemic Sclerosis. Click here
I focussed on the treatment of digital ulcers on DAY 24 of Scleroderma Awareness Month 2016.
In 2015, I was honoured to be part of the medical team who devised the NHS Guidelines for treatment of digital ulcers in Systemic Sclerosis. Click here
I focussed on the treatment of digital ulcers on DAY 24 of Scleroderma Awareness Month 2016.
2018 UPDATE:
So far this year, Deani has spent a LOT of time in hospital, sadly. She has
required numerous Iloprost treatments and is currently undergoing an Iloprost treatment
at the Royal Free Hospital.
Not only are digital ulcers a challenge to Deani, but the soft tissue of
her forearm is also a BIG medical challenge.
RESEARCH:
I have not yet taken part in any clinical trials, however, I hope to be a participant at the Royal Free Hospital, soon.
IN BETWEEN MEDICAL APPOINTMENTS:
When not plugged up to an Iloprost drip, Deani has an abundance of
creativity.
Here is a photo of some drift wood which Deani has added her magic touch
to.
HUGE thanks to Deani for sharing her experience for Scleroderma
Awareness Month.
Please hold her in your prayers for her and her arm, in your prayers at
this time.
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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