Tuesday, 12 June 2018

Scleroderma Awareness Month 2018. Unmet Clinical Needs. Raynaud’s, Autoimmune, Rare Disease

Scleroderma Awareness Month 2018 – Unmet Clinical Needs.
Scleroderma, Raynaud’s, Autoimmune, Rare Disease
#SclerodermaFreeWorld #RaynaudsFreeWorld

 
 
We are nearly a week into our annual awareness month, 'spotlight opportunity' for raising awareness about our rare disease and our day to day reality.  

Further to this year, and last year's Rare Disease Day theme being 'Research', combined with my personal experience and view about the importance of research, my Scleroderma Awareness Month 2018 campaign, is also based on research. 



Due to the overwhelming success and interest shown towards my global Patient Profiles Campaign started for Scleroderma Awareness Month 2017, I have updated each patient's profile with their personal experience of medical research, and what they think about medical research.  

I owe huge gratitude and hold immense admiration, to ALL of the patients who kindly took part in the campaign and who, have kindly provided an update as to their general health and symptoms, also. Video.


As patients, we know all too well, how this diagnosis is more often than not, a full time job with symptom management.



I have a strict diet and daily routine, in an attempt to minimise the severity of my symptoms, but even then, the Pandora’s Box connected to my scleroderma or my Raynaud’s symptoms will present with further unwelcome surprises.

Whilst updating each patient’s annual review, it was, sadly, no surprise for me to see that no patient has reported a marked improvement with their symptoms.

All patients continue to report their same set of symptoms, if not an increase in severity, along with several other additional symptoms, over the course of the last 12 months.

However, I was surprised, and sadly, not in a good way, the number of patients who have not taken part in any clinical trials, but, are willing to do so.

Here, I am earlier this year, in my Patient Research Ambassador role with the National Institute for Health Research, talking about why I think medical research is so important.


Although scleroderma patients are few in number globally, hence the title ‘rare disease’, and no two patients display the exact same set of symptoms, there are similarities which can been seen.

The following clinical unmet needs were prevalent, for the majority of the patients, who kindly took part in the global patients profile campaign:

CALCINOSIS, Click here  



GUM RECESSION, TOOTH EXTRACTS, Click here 



SOFT TISSUE, ULCERS, Click here  



TELANGIECTASIA, Click here 



SCLERODACTYL HANDS, Click here   



INVISIBLE DISABILITY, Click here 



RAYNAUD'S, Click here 



GASTROINTESTINAL, Click here   



By no means is this an exhaustive list of the current clinical unmet needs experienced with a scleroderma and Raynaud’s diagnosis.

This plethora of symptoms illuminates the systemic effect which the disease process has on the body. 

Thus, a multidisciplinary medical expert team is essential, for best patient care and management. 



My Scleroderma Awareness Month 2016 campaign focussed on the systemic effect and treatment options available.  

Another sad reality, in my view, which most of the profile patients have reported, is the cocktail of drugs which they take on a daily basis, in an attempt to just suppress their symptoms.  
  
It is however, very encouraging and exciting, to see some improvements in the disease management, care, and understanding process.

For, Swiss patient Alice, has just celebrated her 6 year double lung transplant, and UK patient Sarah, reports an improvement with her symptoms, further to her stem cell transplant. Although, not with the contracture of her fingers, sadly. 

Thanks to Sarah for sharing her image for the ‘Sclerodactyl’ image. And of course, the miraculous Roy and Jacob from the USA!  

In fact, ALL of the patients, show immense inner strength and bravery, and are ALL scleroderma miracles, in my view! 



Only a few weeks remain until World Scleroderma Day, 29th June.

Each participant of the global profiles campaign has also included within their 2018 update, what they do ‘In Between Medical Appointments’. 

As well as, several patients have kindly shared their creative ‘show stopper’s on social media, which will be collated into a video for World Scleroderma Day. 

If you would like to be involved – please get in contact!  

World Scleroderma Day 2017, Flashback 

World Scleroderma Day 2016, Origins of the date 


World Scleroderma Day 2015, 29th June. Presentation at the European Parliament. 


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 

This experience still remains one of my few patient highlights of the last 21 years. Even though, the travelling was a harsh reminder as to why I had not been abroad for the previous decade!

In my view, medical research provides immense HOPE for a much needed improvement with our day to day reality. As well as, an improvement in the prognosis for newly diagnosed patients. AND, ultimately the dream – a Scleroderma Free World.   

          
Follow: 

Facebook Page: Raynauds Scleroderma Awareness Global Patients

Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld

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 / admin costs. Thank You. 
#HOPE   




 An edited version of this article was published here, in my Column with Scleroderma News. June 2018. 
    
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 took 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: June 2018

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