Tuesday, 23 May 2017

Scleroderma Awareness Month, June 2017, Patient Profiles Campaign, Raynaud's, Autoimmune Rare Disease

June is Scleroderma Awareness Month, with the 29th June being World Scleroderma Day. 

Sadly, as patients, we all know too well, every day is ‘scleroderma day’ for us. 

In this article, I want to highlight the importance of maximising the opportunity of scleroderma awareness month, as well as, provide some ideas, as to how you can get involved, even if it is only remotely. 

Living with a rare disease, whose cause and cure, currently remain a mystery to the scientific community, certainly makes you become an expert in your own medical condition, as well as your own patient advocate. 

I wrote more about this, here   

June, awareness month provides a perfect platform to not just raise awareness about scleroderma the disease in detail, but also, the entire global landscape surrounding improving best patient practice and care, for the scleroderma patient. 

As indeed, does any awareness month where scleroderma can be included, such as, recently, March was Autoimmune Disease Awareness Month #ADAM. 

To read my article ‘March Autoimmune Disease Awareness Month’ 2017, Click here  

Last year, for Scleroderma News, I focussed my Scleroderma Awareness 2016 campaign on all of the different aspects to the disease, starting from the differing subsets and classification for diagnosis, to then detailing symptom involvement and treatment options / guidelines. 

Here is a 2016 Flashback 

Here  is the link to the 2016 Campaign Facebook Gallery. 

Further to this year’s Rare Disease Day theme being ‘Medical Research – with research possibilities are limitless’, I have made ‘Medical Research’ the topic for my Scleroderma Awareness Month 2017 campaign. 

To read my articles for Rare Disease Day 2017, Click here, where I focussed on research in general, and here, to read my article, where I highlighted examples of unmet clinical needs to the scleroderma Raynaud’s patient. 

In my view, medical research provides immense hope when living in the scleroderma Raynaud’s, rare disease patient, unknown abyss. 

Where management of symptoms is controlled by symptom suppression as opposed to attacking the direct underlying cause. 

However, the last few years have seen some very exciting developments in the field of medical research and treatments for the scleroderma Raynaud’s patient. 

This is evidenced by the launch of ‘The Journal of Scleroderma and Related Disorders’, (JSRD), at the 4th Systemic Sclerosis Congress last year. 

The Journal has now published 4 volumes with the 5th volume, soon to be distributed.   

The contents of the Journal show all of the differing approaches being taken to understand the biological processes and systems involved in the scleroderma Raynaud’s pathway.  

I wrote about the launch of the Journal, here

Current medical understanding has improved to now be able to identify the differing immune cells and micro-immune cells, involved within the inflammatory process, thought to lead to fibrosis-  JSRD Volume 2 Number 1 Jan – April 2017.  Click here  

Fibrosis / thickening, being one of the key identifying features of most scleroderma subtypes, and included within the ACR / EULAR diagnostic guidelines, which are globally recognised for classification purposes. 

See DAY 6  Scleroderma Awareness Month 2016 Campaign. 

Further understanding has improved with ‘The emerging strategies now being used as an approach to treat systemic sclerosis’, target the immune response as well as vasculopathy (blood vessel damage). JSRD Volume 1 Number 2 May – Aug 2016. 

View my article and abstract excerpts on this, here 

On a personal note, it is unlikely that the discovery of a cure will be of any direct assistance to me personally, since I am one of the ‘lucky’ scleroderma patients whose disease is in remission. 

Albeit, the damage which the disease has had on my body, makes for a full time job, with looking after my symptoms. 

This never the less, does not dampen my desire to see a cure being discovered in my lifetime. 

Nor indeed, the cause being discovered, in my lifetime. 

Infact, this is my ultimate dream, and my elixir to get better.  

#SclerodermaFreeWorld   #RaynaudsFreeWorld

I have spent many years ruminating on why my body wanted to do this to itself. My symptoms forced me into a whole new lifestyle where my body is now the pilot and not my desire to fulfil my career ambitions. 

By changing my diet and attitude, along with the exceptional medical expertise of Prof Denton and my medical team, I am reversing my symptoms, slowly. 

However, I still remain elated at having been told ‘my skin is cured of scleroderma’ last November, almost 18 years to the day since having first dragged my tin man body to the Scleroderma Unit, 12 months post initial diagnosis, whereby I was given a 15month prognosis. Read more, here  

To keep updated about my Scleroderma Awareness Month 2017 Campaign, follow the posts at Scleroderma News as well as, my Facebook Page ‘Raynauds Scleroderma Awareness Global Patients’ linked with this blog. 

And please post in the comments below for any ideas / events which you may have and would like to share. United, globally we will crack the scleroderma Raynaud’s code.  

 



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





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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