Tuesday, 6 June 2017

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

Deani Baillie, UK, June Scleroderma Awareness Month 2017 Patient Profiles

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, Click here   



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     



To read my articles  

Importance of an early diagnosis, Click here 

Taking Part in Clinical Research Trials, Click here

Expert Specialist Centres, Click here 

My Skin is Cured from Scleroderma, Click here 

UK Guidelines for Managing and Treating Scleroderma, Click here

World Scleroderma Day 29th June Click here    

Please donate to help fund medical research at The Scleroderma Unit where 100% of all of your monies will be used for medical research purposes only. Thank You.  

June 2017 total
DONATE     

Living the dream hoping for a cure

#SclerodermaFreeWorld #RaynaudsFreeWorld
#RareDisease #Hope #Belief 

Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates 

Thanks to USA patient Sharon Esposito for sharing her wonderful creativity

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