Tuesday, 6 June 2017

Deani Baillie, UK, June Scleroderma Awareness Month 2017, Raynaud's, Autoimmune Rare Disease, Patient Profiles DAY 6


Deani Baillie, UK

Patient Profiles DAY 6

June Scleroderma Awareness Month 2017

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 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 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!  

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. 

    



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   

2017 INDEX Scleroderma Awareness Campaign Patient Profiles, 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   


Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here     
 
Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here        
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here


Key Event Dates 2018, Click here     

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    



World Scleroderma Day 29th June 2016, 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:
The theme to this years Rare Disease Day is Research

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 UK Parliamentary Reception   


2017 Rare Disease Day Flashback  
  


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


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


Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   

Preamble - 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  


#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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