Monday, 30 April 2018

Travelling With An Invisible Disability – BSR Presentation 2015, Scleroderma, Raynaud's, Autoimmune Rare Disease, Nicola Whitehill



Travelling With An Invisible Disability – BSR Presentation 2015 
Scleroderma, Raynaud's, Autoimmune Rare Disease

May 1st - 3rd, TODAY, The Bristish Society for Rheumatology (BSR) is holding its annual conference. 

This year, Liverpool is the hosting city, which is not too far away from me here, in Southport.

Sadly, the practicalities of me actually being able to attend, even though the venue is not too far away, are endless.

As with everything, you only get to know your limitations by putting yourself out of your comfort zone. 

Being in my 21st year of living with the autoimmune, Rare Disease scleroderma and Raynaud’s diagnosis, I have learnt the hard way, that by pushing myself with physical exertion, my body will protest, and with a vengeance.

April 2015, I was honoured to be a presenter at the BSR’s annual conference in Manchester.
 
My presentation included my symptoms, the chemotherapies and immunosuppressants which have stabalised my disease activity, as well as, my survival and coping strategies, for living with this life changing in every way imaginable and unimaginable, diagnosis.

However, for purposes of the remainder of this article, I intend on highlighting the actual physical difficulties which arose, just with the logistics of me being able to live a day, like a ‘normal’ person, during my trip.
 
Manchester is only 40miles away from Southport, with a direct train line.

I am not easily transportable at the best times, unless sitting in the front passenger seat of a ‘constant temperature’ heated car.

This is in an attempt to minimise my Raynaud’s flaring

The smallest decrease change in temperature, regardless of how warm it is, will be sufficient to trigger my hands to spasm and change colour. 




This situation has to be avoided, especially if ulcers or calcinosis are present. The presence of which, has been my ‘normal’ for over two decades now. 



However, I was so delighted at having been invited to present at the BSR conference 2015, I took myself out of my comfort zone, and booked my train ticket to Manchester, departing Southport 6.20am.

My alarm clock was set for 3.30am.

3 hours is my ‘normal’ time for being able to push my tin man body out of my front door, upon waking.

The days of waking up, feeling refreshed, jumping out of bed to take a quick shower and fly out of the door, are long gone, and a very distant memory.

As I was driving along the coast road to Southport train station, the sun was just visible above the horizon, with a hazy blue sky.

I parked up in the station car park and thought what a miracle it was that I had made it out at this time, and on time!

I then went and schmoozed the train guard to allow me to stay near his heater, until my train arrived.

A quick flash of my blue / black tinged hands, briefly removed from my Ugg gloves, did the trick. As opposed to my female persuasive charms, which scleroderma depleted years ago, judging by my latest admirers! Haha!

The hour train ride was a whole new experience, one which I have not repeated since, and do not intend on doing again with my 'tin man' body. 



My musculoskeletal inflammation and stiffness makes me feel as though my body is weighed down with lead. Along with muscle fatigue beyond measure. This is before I even leave my home, and is my constant.

I have quite long legs, with my scleroderma swollen ankles and knees, andso, sitting in any confined space such as a seat on any public transport medium, is uncomfortable, almost impossible, for me.

However, for purposes of an hour, I put myself out of my comfort zone, and sat trying to ignore the intense discomfort, added by the motion of the train.

As the train approached Manchester, it became very busy. This required me having to apologise to my fellow near by passengers that I was unable to bend my legs more to make more leg room available.

I was very relieved to arrive in Manchester. Upon alighting the train, there was a huge set of steps, to get up to exit the station. My heart sank. I could not stop, as the flow of the crowd was too strong.

I gripped the hand rail at the side of the steps, as best as I could. I have very little, if any, grip, due to my very tender, sore, scleroderma damaged fingers.

I then had to negotiate trying to get my legs up the steps, bending my swollen, stiff knees. I had just about got into a rhythm, albeit elegance and style were not included, when a perfectly abled body, man stood in front of me, coming down the steps.

He was in a rush and was telling / shouting at me to move out of the way.

I tried to explain to him that I was unable to let go of the handrail, but he pushed me out of the way, causing me to stumble into some people! 

I eventually made it up the steps and reflected on my ‘invisible disability’ persona experience.

Had I been equipped with a sign around my neck, Paddington style, or maybe a teal ribbon tattoo, would this have prevented my recent public humiliation, by trying to be ‘normal’ again?

I doubt it – ignorance is ignorance, and as patients living with a degenerative Rare Disease, education and awareness of such, come along as an optional duty, sadly. 

This Scleroderma Olympian is in training for the Scleroderma Unit Family Day on the 19th May at the Royal Free Hospital. 

Living the dream, scleroderma style.         
          
Follow: 

Facebook Page: Raynauds Scleroderma Awareness Global Patients

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. Thank You. 
#HOPE   



An edited version of this article was published here, in my Column with Scleroderma News. April 2018. 
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 Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, 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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