Deani
Baillie, UK
Patient
Profiles DAY 6
June
Scleroderma Awareness Month 2017
 |
| 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 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 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 Hopspital, 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!
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:
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.
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
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.
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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