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, 
of Living with Scleroderma, Raynaud’s, 
Autoimmune Rare Disease.  

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. 

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   


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  

More unmet clinical needs  

Rare Disease Day 2016



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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