Thursday, 22 March 2018

Jan Petrie Procter, UK. AUTOIMMUNE DISEASE AWARENESS MONTH, 2018. Scleroderma, Raynaud’s, Autoimmune Rare Disease

Jan Petrie Procter, UK
AUTOIMMUNE DISEASE AWARENESS MONTH 2018
Scleroderma, Raynaud’s, Autoimmune Rare Disease



Name and Location:   
Jan Petrie Procter, UK


Presenting symptoms: 

Digital ulcers 

I was diagnosed with CardioMyopathy (Heart Failure) in 2012. Until that time I was extremely healthy and had had no major illnesses. The cause of the heart failure is still unknown although my doctors have suggested the most likely cause is having contracted a virus at some point.  

Managing my heart failure took a couple of years but eventually we got the condition pretty much under the best control possible and life continued, albeit I had to stop work for a while due to my health.   

Approximately one year on, in 2013, my fingers were very painful, with increasingly severe ulceration. Tips of a couple of fingers were black, others had digital pitting. A number of visits and pleas for help to the GP and also the practice nurses came to nothing.  

In desperation, I was doing my own research into the problems I was dealing with regarding my fingers, such as extreme pain when I had hardly knocked them.   

I was then rushed into hospital in an unrelated incident, and happened to have a doctor see my fingers, I was immediately admitted to hospital, where I stayed for five weeks – yes five long weeks in the middle of the summer – not knowing what was wrong – why I was there – with very sick people – and feeling sicker than ever myself!




What are your 3 biggest current challenges due to your diagnosis? 

Managing to do normal things with such painful fingers eg. typing, opening jars, washing hair etc  
I hate the way I look when my skin is particularly tight, dry, sore and flaky   
Tiredness


What are your 3 wishes for the future? 

Yes, sometimes I feel desperately frightened for the future. Googling symptoms, life expectancy, outcomes, etc has previously sent me into a pit of depression, but in general, I think I tend to manage my symptoms, probably not as well as I should, as I think do have a tendency now, to bury my head in the sand to some degree.   

But my philosophy is – there are far worse things happening to far better people than me. I have been lucky- it could be so much worse. I am so, so, fortunate to have a wonderful support network of family and friends (despite the fact that I pretty much never mention my illness and just hope that they understand when I have to pull out of events etc). So, it’s ever onwards to the next adventure – who knows what’s around the next corner – for me, it’s a diving trip to Egypt in four weeks – I will not give up.


To read more about Jan’s Scleroderma, Raynaud’s, Autoimmune Rare Disease reality, Click here



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  
  





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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