Tuesday, 18 July 2017

Flashback Scleroderma Awareness Month 2017, Raynaud's, Autoimmune, Rare Disease



Flashback Scleroderma Awareness 2017

Last month, June, was Scleroderma Awareness month, with 29th June being World Scleroderma Day

And, WOW, what a busy month it was, for raising awareness of our multi complex, autoimmune, Rare Disease. 

In this article I discuss the importance of raising awareness, along with the results of my patient profile global campaign and medical research.
  

Why raise awareness?  

This is our opportunity to spotlight the entire scleroderma and Raynaud’s experience in all of its forms. 

Whether that be from the symptoms experienced, to their management, as well as, the day to day reality, resulting from the disease process.  

Having a rare disease forces you to become your own patient advocate

As well as, it forces you to become your own medical expert in your diagnosis, along with, its optimum treatment and best management. Expert specialist centres are crucial to implement this. 

For 2017, I focussed my awareness month campaign on patient profiles and research across the globe. 


This highlighted the 3 common hallmarks for best practice, regardless of location. 

Namely: 

Expert Specialist Centres 

Access to innovative medicines  


At the end of Week 3, I discussed the current medical research landscape in relation to making progress to discovering the cause and cure of scleroderma and Raynaud’s. 

The global patient profiles highlighted several current unmet clinical needs, showing that, although no two patients display the exact same set of symptoms, some similarities can be made.  

I will be discussing these clinical unmet needs in more detail, in future articles.  

My fingers and eyes are still protesting at the increase in computer / keyboard use over the course of the month, with several new lumps of calcium appearing at the tips, due to excessive use. Living the dream indeed!  


calcium on the pressure pad of my little finger


Global interactions 

Again, our friends over in Canada, showed the rest of the world how to raise awareness of scleroderma. Huge thanks to them, for all that they do, and continue to do: 

On 29th June, World Scleroderma Day, I was delighted to receive via the post, my ‘Me&Sclero’ goody bag – a total surprise and perfect timing! 

A lovely bag, information leaflet, T-shirt and business card.   





Huge thanks to Sarah, DAY 27, for her generosity and her tireless awareness raising, all year round.   





I am very excited about Sarah’s scleroderma project, and I wish her all the success in the world, with raising awareness of our disease. Please support her fundraising efforts. 

And Thank You to Sarah, for her generous donation to the Scleroderma Unit Just Giving Page.

USA based Scleroderma ResearchFoundation made a video, outlining the progress which has been made so far, over the last 30 years. As well as, they raised an amazing 1.4 million at the Cool Comedy Hot Cuisine event, held in LA on 16th June.  Thank You!

  
So, the rest of the year? 

 

Huge thanks to USA patient Sharon Esposito for sharing her wonderful images for Scleroderma Awareness month. View more, here

As we know all too well, sadly, our true reality is that we live with this diagnosis 365 days of the year. 

My 2016 Scleroderma Awareness Month campaign, focussed in more detail on the symptoms and body parts affected, with a flashback to my 2016 awareness, global efforts.  






Our reality as a patient: 

Each day brings along a variety of different symptoms which have to be respected and prioritised, in the hope to have the best day possible, given the diagnostic reality. 

On some days, this means spending the day in bed

All of the patient profiles showed, fatigue and tiredness, as constant companions.


Medical Research Progress: 

5th World Congress in Systemic Sclerosis, Bordeaux, France 

The5th Systemic Sclerosis World Congress is due to take place Feb 15 – 17  2018 in Bordeaux, France next year. 

This bi-annual event is the hub of the most up to date advancements in research, and current understanding of the entire scleroderma disease process.  


Summary:  

Overall, an improvement in the medical understanding as to the nature of the disease and its implications, has improved immensely, over the course of the last decade.  

However, due to the multi complex body systems involved in the scleroderma, autoimmune disease process, research still falls way behind with providing an understanding as to the cause, and effective treatments, leading to a cure.



Thank You to everyone who took part in the patient profile campaign, as well as, Thank You to everyone for your support and encouragement throughout the campaign, sharing the same dream – a Scleroderma Free World.
 



INDEX Scleroderma Awareness Campaign Patient Profiles 2017
       

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.
 
Living the dream, hoping for a cure

#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.

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   

The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, 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 

Tuesday, 11 July 2017

29th June World Scleroderma Day 2017. Scleroderma Awareness Month 2017. Raynaud's, Autoimmune Rare Disease.

29th June, World Scleroderma Day 2017

June Scleroderma Awareness Month 2017 

Raynaud's, Autoimmune Rare Disease 




29th June World Scleroderma Day 2017   


29th June, is World Scleroderma Day.  

This is OUR opportunity to showcase the rare disease, scleroderma, to the World- in the hope to raise awareness, in all of its guises. 

Whether it be awareness for fundraising purposes for investment in research, for that oh so desired cause and cure, or, awareness, for education purposes. 

This is OUR day to put the spotlight on the rare disease which we live with, 365 days of the year, with no holiday break from it. With hope and pain, as our constant companions. 

Thanks to USA patient Sharon Esposito
Why 29th June?  

The actual date, 29th June, commemorates the date when the gifted Swiss-German artist, Paul Klee (1879 – 1940) died. It is thought that it was not until 10 years after his death, that Klee was diagnosed with diffuse systemic sclerosis. 

I discussed this in more detail in a previous article, here  


June Scleroderma Awareness Month 2017 Patient Profiles and Research Campaign 



This year my June Scleroderma Awareness Month campaign has been focussed on Patient Profiles, Index

Including patients from all over the world, highlighting the best practice and management of the scleroderma patient, along with the current unmet clinical needs

I have combined these requirements with the current medical research focus for such, and I will be providing an overall outcome in due course.  

DAY 29, World Scleroderma Day, I focussed on the extremely brave USA child patient, Wyatt the Warrior.

   
However, the main golden hallmarks for best practice, regardless of the location are:  


Early Diagnosis 

Expert Specialist Centres 

Access to innovative medicines  
 

These golden hallmarks run parallel to medical research being at the nucleus for optimum management and prevention.  

By understanding the biological processes as to why the immune response is triggered in the first instance, for the body to then manifest such symptoms, will most certainly reduce the life time burden this disease brings. 

Financial investment in medical research, along with global collaboration of progress in understanding is paramount. 

The launch of the Journal of Scleroderma and Related Disorders (JSRD), at the 4th Systemic Sclerosis Congress, last year, is a most welcome advancement in the sharing of scientific data and understanding. 

The contents of the Journal, as by the current 5 Issues, show the current clinical research areas of focus for the entire, holistic, scleroderma experience.  

The 5th Systemic Sclerosis World Congress, is due to take place Feb 15 – 17  2018 in Bordeaux, France next year, where the most up to date research data will be presented.  

  

WORLD SCLERODERMA DAY 2017 

Similar to last year, there are numerous events being held worldwide, varying from ‘out and about’ walk in the park activities, to virtual walk social media participation.  
 
Our friends over in Canada continue to set the bar high, for the rest of the world, with their scleroderma awareness raising. 

As again, this year, they are lighting Niagara Falls in blue and the Peace Bridge in teal. 

If you can not experience this in person, you can watch it live via the Scleroderma Canada Facebook Page   
 
Although not nearly as thrilling as seeing the Niagara Falls, I will be presenting live on the Scleroderma News Facebook Page. 

Please comment below if there are any topics in particular, which you would like me to discuss.

The Scleroderma Unit, The Royal Free Hospital, London
Long term diffuse systemic sclerosis patient Lyn is holding her debut book launch. I am very excited for Lyn, as I am sure you are.


WORLD SCLERODERMA DAY 2016

Last year, 2016, saw a very busy 29th June World Scleroderma Day with activities and events taking place all over the world, as well as, a very busy June Scleroderma Awareness Month 2016. 
   

WORLD SCLERODERMA DAY 2015   


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 MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here   
 
I had not been abroad for over a decade prior to this trip, and my 7 week bed rest following the trip, was a harsh reminder as to why I had not been away for so long!! 

However the experience remains one of my few patient highlights of the last 20 years.  

 


Wishing you a very happy and most blessed 29th June World Scleroderma Day.

To read more about why I chose ‘Patient Profiling and Research’ as the focus of my 2017 campaign, Click here    



Why Research and Patient Profiles? Scleroderma Awareness Month 2017, Raynaud's, Rare Autoimmune Disease, Click here   

2017 INDEX Scleroderma Awareness Campaign Patient Profiles, Click here    


INDEX to Scleroderma Awareness 2016 Campaign, Click here     






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