Monday, 9 April 2018

The Fun Snatchers - Scleroderma, Raynaud's, Autoimmune Rare Disease.

The Fun Snatchers 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 


#SclerodermaFreeWorld  #RaynaudsFreeWorld  




Those three words, ‘You have scleroderma’….followed by, ‘and Raynaud’s’ have without doubt, life changing consequences, if not, life threatening consequences.   

In this article, I discuss the day to day impact which these three words have, in relation to the lifestyle adjustments and changes required, to respect the full impact of the symptoms. 

Paradoxically, hearing those words, actually come as a relief, to most scleroderma and Raynaud’s patients, as evidenced by my ‘patient profile combined with research campaign’, for June scleroderma awareness month 2017.  

I have written about my initial diagnosis and the importance of an early diagnosis, previously. 

As well as, my personal rationale for making the ‘patient profile combined with research campaign’, for June scleroderma awareness month 2017. Week 3.   

I am truly convinced that my personal 20 year experience of living with scleroderma and Raynaud’s, is contributed to me being diagnosed within a few months of my initial presenting symptoms, followed by a second opinion at the Scleroderma Unit expert centre, The Royal Free Hospital, 15 months later. 

Whereupon, I was subjected to a rigorous 18month chemotherapy regime which eventually stabalised my symptoms. With my ‘Skin now being cured from scleroderma’, 19 years later.  

After having been told ‘You have scleroderma’, I was then told that I was probably looking at a maximum of 15months, due to the aggressiveness with which the disease was attacking my body. 

At the time, 1997, I was working in the pharmaceutical industry as a medical representative, as well as, studying towards my barrister qualifications on a distance learning basis. I was advised to give up my dream of being a barrister and to accept my medical fate. 
 

 

Scleroderma and Raynaud’s the fun snatchers    

On 1st March 2004 I qualified as a self employed barrister, and stopped the daily 2g mycophenolate mofetil regime of the previous 6 years. 

I am now 13 years immunosuppressant / chemotherapy free. The only medication which I take is bosentan 125mg twice a day, along with Co-Proxamol analgesics for emergencies. 

Sadly, the physical requirements of the barrister role were too demanding on my scleroderma and Raynaud’s damaged body.  

Although my level of disease is stable, my day to day reality is dictated by my symptom demands caused by the damage from the scleroderma, when it was active. 

Namely, musculoskeletal pain, GERD involvement, calcinosis and I have extremely sensitive Raynaud’s.  
 
This combination of symptoms makes for easier management, by me staying at home as much as possible. In an attempt, to minimise severity, as well as, an attempt to prevent Raynaud’s attacks. 

I also have a strict diet.    



Hottest day of 2013 - I had to wear Ugg boots and gloves

Prior to my body developing scleroderma and Raynaud’s, I was a very outgoing social individual. Now, my social life, as well as my working / career life has been superseded by medical appointments taking priority in my diary and depleting my limited energy stores. 
 
I am a huge fan of Andy Murray, the UK tennis player, who sadly was not able to defend his Wimbledon title fully this year, due to a hip injury. 

I am sure, every scleroderma and Raynaud’s patient can relate to a similar intense disappointment and sadness at not being able to fulfil a desire, due to their body not being up to it.  
In particular, I am no longer able to play tennis, a sport which I very much enjoyed. 

Infact, all exercise is extremely challenging for my ‘tin man’ body. I have the utmost respect for my fellow patients who are still able to exercise.   

I have learnt, over the last few decades, to not focus on what I can no longer do, and focus on what I can do, and, on what makes me feel good.   




I have shared more of my coping strategies on my  www.cosmicfairy444.blogspot.co.uk  





So, although this party girl is no longer able to be so foot loose and fancy free, the party has been relocated to my lounge, with the best DJ, and no queue for the conveniences.  


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 

Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates 
 




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


The Fun Snatchers 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 


#SclerodermaFreeWorld  #RaynaudsFreeWorld  

  





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