Tuesday, 10 April 2018

The Few Highs and Many Lows of Living with Scleroderma, Raynaud’s, Autoimmune Rare Disease

The Few Highs and Many Lows
Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#SclerodermaFreeWorld  #RaynaudsFreeWorld  



Those life changing words ‘you have scleroderma’ followed with ‘and Raynaud’s phenomenon’ are often met with relief, paradoxically, due to finally having an explanation as to what is happening to your body. 

And then, within seconds, the reality hits in, of what those words actually mean and what will the future entail.   

Living with a rare disease where there is currently no cure and limited understanding as to causation, most certainly presents many challenges, not just with symptom management, but life style changes also, making for no two days to be exactly the same, due to the multi complexity of the disease.  


 
 
This also makes for no two patients to display the exact same set of symptoms, adding to a timely diagnosis and ultimately, the disease management process. 
 

 

  
My recent patient profile research campaign for scleroderma awareness month 2017, INDEX, highlighted the necessity for an early diagnosis, along with expert specialist centres for best patient management and care, with access to advanced innovative medicines

The patients who kindly took part in my campaign all described their day to day reality being dominated by their disease management. 

I have described my full time job  with my symptom management previously.  
 

The highs  

#SclerodermaFreeWorld #SclerodermaAwareness #iamscleroderma  

I am extremely grateful to those patients who agreed to share their disease process reality for scleroderma awareness month. 

I had not prepared myself for the emotional roller coaster which the campaign provoked within me, whilst being reminded of those, my, ‘initial years’, when compiling each patient’s daily reality.  
 
However, I was encouraged that my Sjorgren’s symptoms were abated for this time. Especially, as I thought that I was all cried out from the decades of living with the scleroderma and Raynaud’s fun snatcher / body hijacker.  
 
So, although the campaign pulled on my heart strings, I very much enjoyed the interaction with my fellow patients from all over the world, and remain extremely humbled by their personal strength, tenacity and bravery with how they manage their disease.  
 
Wyatt the Warrior was the brave scleroderma patient who featured on World Scleroderma Day 29th June. Candace, Wyatt’s mom, has recently put together a scleroderma awareness video combining with #iamscleroderma. 

If you would like to be included please visit the Facebook page and post your photo which can then be uploaded into the video.  

Here is my photo. 
 

 
 

 

This video shows to the world as to the amazingly supportive and proactive scleroderma global community we are.  
 
Our global community is most definitely one of my few high points of being on the scleroderma ‘not-so-fun bus’.  
 
Huge thanks go to Candace for all that she does with her efforts for scleroderma awareness. As well as, huge thanks to the Sclero Sisters, Aly and Sheryl, and of course Sharon Esposito for sharing her wonderful creativity for scleroderma awareness. 
  


Wyatt the Warrior and his family


Flashback 2017

I give further detail about my scleroderma and Raynaud’s highlights in DAY 12 of the patient profile campaign. 

 

The Lows     
 
Sadly, my word limit for this article will not allow me to fully document the ‘more so’ challenging aspects to living with this rare disease.  

Many patients included in the patient profile campaign highlighted not just the disease symptom suppression being difficult, but also the psychological aspect, and the effect of the diagnosis on family members and friends.  

I have shared some of my personal strategy coping mechanisms via my cosmicfairy444 blog and Facebook page. 
  

   
 
However, sadly, the harsh reality of living with this diagnosis, means that you lose fellow patients, who have become dear friends, to the disease.  
 
This happened to me recently, and it has taken me a few weeks to write about my lovely Australian friend Silvana Vidmar, who died on the 22nd July 2017. 
 

RIP Silvana 14/12/1965 - 22/7/2017

 

  
I have mentioned Silvana before, in several of my articles, as we used to make a special concerted effort to contact each other on the Winter and Summer Solstice.  
 
Sadly, Silvana was not well enough to take part in the patient profiles research campaign 2017. Silvana will always hold a special place in my heart. RIP.  

Silvana Vidmar 

14.12.1965 – 22.07.2017  



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. 
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.       


The Few Highs and Many Lows
Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#SclerodermaFreeWorld  #RaynaudsFreeWorld  








No comments:

Post a comment