Wednesday, 11 April 2018

‘You should get out more’ - Scleroderma, Raynaud's, Autoimmune Rare Disease

‘You should get out more’ 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#SclerodermaFreeWorld  #RaynaudsFreeWorld  



These words of ‘advice’ were recently given to me by a non scleroderma patient friend. I am sure that this friend was meaning well, in their approach. 

However, on the cusp of my 20 year anniversary since my initial diagnosis, I know that I am the best judge to determine what I should be doing, to minimise my daily symptom severity, and assist my body with its return to well being.  
 
I am eternally grateful to my medical care dream team, and the world expert Prof Chris Denton who is my clinical lead doctor. 

Even though, my current reality for my optimum symptom management, is my full time job

Living with a rare disease which is multi complex in its approach, makes for a busy diary filled with medical appointments. 

I am a lucky scleroderma patient by way of having only minimal internal organ damage, keeping my medical appointments to the most minimum that I can. 

Since the effort which goes into moving my 'tin man' body, has to prepared and planned for, days in advance – the Scleroderma Olympian.     


 

Having had an adventure out, whether it to be to attend a medical appointment or grocery shopping, my body will be in protest for a few days after. Accompanied by an overwhelmingly level of fatigue, which must be respected to minimise my pain severity and mobility.  

'Ah great another day to spend in bed' is certainly not one of my favourite mantras. However, I know that this will be inevitable, following any major physical exertion of ‘getting out more’, including ‘Living the dream being your own Raynaud’s scleroderma, rare disease advocate’.     


World Scleroderma Day 2015, The European Parliament, Brussels


I also have to remind myself that 'my job today is to simply get better'.  

I have a strict daily regime to assist with my return to well being, including my skin care routine and my diet

Upon waking it takes me 3 hours to be physically ready to be able to leave my front door.  

Following a 'big day out' to London, it takes me 10 days of intense rest to return my body to my daily routine regime. All of this makes for a time manager connoisseur. 
 
However, sadly, as all scleroderma patients, I am sure, will be able to relate, there is no precise science to predicting which symptoms will flare or appear on a day to day level. 

This fluctuation being exacerbated by the weather temperature / time of year. 

Here in the UK we are approaching the end of summer. I am trying to not wail at the thought of my house arrest daily reality, as a result of the forthcoming seasons. 

My Raynaud’s symptoms are so severe that the 'Magic of Summer' brings only marginal improvements. 

These include feeling warmer, and not having to wear as many layers of clothes. 

Sadly, my inner ‘Bond Girl’ is still suppressed by the ‘all year round’ Ugg boots and gloves, essential accessories.   


Hottest Day of 2013 - I have to wear Ugg boots and gloves


For me, the seasonal change, brings along a different set of symptoms, including my skin does not feel as soft. 

Although, I continue to remain in a state of elation that 'my skin is cured from scleroderma'. 

My skin is very sensitive to clothing materials, making my chosen preferred outfit to be my pyjamas or sweat pants. This is not because I am lazy, this is because, these items of clothing are the most comfortable against my skin.  

The actual process of getting dressed becomes a whole new feat with a scleroderma body, made worse with depleted energy levels. All of this must be accounted for in preparation for ‘getting out more’. 
 
This month I have several ‘dates’ which I am fine tuning my body for. 

These include the UK Aortic Dissection Awareness Day on the 19th September. 

As well as, my well being monitoring appointment with Prof Denton at the expert centre, Scleroderma Unit, The Royal Free Hospital. 

So that is a BIG day out, with the following 2 weeks blocked out in my diary, in preparation for my body’s protest at the BIG day out. 
  


December 2016



October is Raynaud’s awareness month. 

   


 


 



Follow Raynauds Scleroderma Awareness Global Patients Facebook Page, here   





And, as for being told to get out more – I remain independent of the good opinion of others, CosmicFairy444.     


   



Living the dream, scleroderma style.  




Please DONATE to help fund medical research at The Scleroderma Unit, The Royal Free Hospital, London where 100% of all of your monies will be used for medical research purposes only


Thank You.

#SclerodermaFreeWorld #RaynaudsFreeWorld
#RareDisease #Hope #Belief
  




An edited version of this article was published here, in my Column with Scleroderma News.  
September 2017. 


  

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.       

‘You should get out more’ 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#SclerodermaFreeWorld  #RaynaudsFreeWorld  










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