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. 



#SclerodermaFreeWorld  #RaynaudsFreeWorld  


 
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, Instagram, Blogger, YouTube: @SclerodermaRF  @RaynaudsRf  
#SclerodermaFreeWorld           #RaynaudsFreeWorld
 
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. 

 

  

Scleroderma Family Day 2020

25th Anniversary Meeting

The Atrium, Royal Free Hospital, London, NW3 2QG

Chair: Professor Chris Denton

PROVISIONAL PROGRAMME


09.30 – 10.00           Registration and Coffee

10.00 – 10.20           Welcome                                                   Dame Carol Black
                                                                Prof Chris Denton & David Abraham

10.20 – 10.40           What is a Biopsy?                                    Dr Kristina Clark

10.40 – 11.05           Dental aspects of Scleroderma            Prof Stephen Porter

11.05 – 11.25           Gastrointestinal problems –                       Dr Fiza Ahmed
shedding new light on old problems 

11.25 – 11.50           Pulmonary hypertension and the heart Dr Gerry Coghlan

11.50 – 12.15           Scleroderma cohort studies –                  Dr Francesco 
                                 ‘Learning from our patients’                     del Galdo

12.15 – 14.15           LUNCH BREAK – see below  

14.15 – 14.45           25 years of progress –                          Prof Chris Denton
from ‘black box’ to ‘positive trials’

14.45 – 15.15           International speaker –                            Dr Madelon Vonk
                                 Scleroderma Management in Netherlands

15.30                        Raffle


Lunchtime Discussions Groups / Demonstrations include:

Clinical Trials                                                                  Rachel Ochiel and team
National Institute of Health Research                            Christine Menzies
Drug Information / monitoring                                        Pharmacy
Massage                                                                         Keith Hunt MBE
Pulmonary Hypertension Education / nursing            Sally Reddecliffe/Adele Dawson
Rheumatology Laboratory                                          Research Laboratory Staff
Scleroderma Education / Nursing                          Louise Parker/ Joseph Cainap
Thermography                                                                Dr Kevin Howell
SRUK                                                                             Ollie Scott
Sjogren’s syndrome                                                       British Sjogren’s Society 


To Read My Articles:  

Gift in My Will, Click here 

Planning for the Future, Click here  

 


Rare Disease Day:   

Rare Disease Day 2020:  

  

Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here  


 

Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt  here   


 
Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click here  

  


 
Rare Disease Day 2019: Leaving a Legacy Gift, Click here       



Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here  

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2017 Rare Disease Day Medical Research  


2016 Rare Disease Day Patient Voice   

2016 Rare Disease UK Parliamentary Reception       

  

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.


To read about medical research at the scleroderma unit, Click here   

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 overall. 

For optimum patient care, 3 hallmarks preside:







supported by a medicaldream team’ 
(expert specialist as the clinical lead).

INVESTMENT in MEDICAL RESEARCH is CRUCIAL.   


To read my articles:  

Celebrating 20 years of being a patient at the Scleroderma Unit, Click here

2019 New Challenges, Click here
 
NIHR Video: 'My Experience of Clinical Trials', 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  

2018 Scleroderma Awareness Raising and Medical Research, Click here    


SCLERODERMA:

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- How to Diagnose, Click here        

'All you need to know', 2016 Awareness Video, Click here    

Global Patient Profiles 2018 Video, Click here    


Unmet Medical Needs, Click here     




Calcinosis Video, Click here    


The scleroderma tooth fairy, Click here     


Skin Cancer and scleroderma, Click here   

 

Sept 2017

Prof Chris Denton and I, Sept 2017

June 2019



This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.  

Read more, here.    

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. Along with the Raynaud's world trail blazer, Dr Kevin Howell.  

I am truly humbled and inspired by their work ethic and commitment to their patients.  

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 original diagnosing doctor, that I was looking at a 15month prognosis. 
 


  

Chat Magazine May 2019

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    


  

World Scleroderma Day 2018, 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, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 

Raynaud's

October:  
Raynaud's, Click here  
 
To view the UK treatment guidelines for Raynaud’s Phenomenon, Click here   

To view the EULAR treatment guidelines, Click here   

To view Thermograph Video, Click here    

To view Thermograph image, Click here    

   
My Raynaud’s reality, Click here     


The global Raynaud's trailblazer - Dr Howell and I, Sept 2017

To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here   

Invisible Disability Awareness Video, Click here

To read My ‘Invisible Disability’ experience, Click here   

50 Shades of Blue, Click here



 

For latest updates follow / subscribe:  

@SclerodermaRF 

@RaynaudsRf 

Twitter, Instagram, Blogger, YouTube, Facebook Page:

#SclerodermaFreeWorld           #RaynaudsFreeWorld    #Research  



Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.  


Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here    
 


100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You. 

  

  
Last Update: Feb 2020.       


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



#SclerodermaFreeWorld  #RaynaudsFreeWorld  










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