Wednesday, 6 June 2018

Deani Baillie, UK. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.

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. 

    


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.  

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:
Importance of an early diagnosis, Click here      
Taking Part in Clinical Research Trials, Click here     


The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here    


Expert Specialist Centres, Click here      
  
My Skin is Cured from Scleroderma, Click here       
UK Guidelines for Managing and Treating Scleroderma, Click here        

Fatigue, Click here         

Mobility, Click here      

Diet and nutrition, Click here     
 

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  
#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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