Monday, 19 February 2018

If we only had more RESEARCH Investment for Scleroderma, Raynaud's, Autoimmune Rare Disease



If we only had more Research Investment, 
Scleroderma, Raynaud's, Autoimmune Rare Disease


Well today is Valentine’s Day! 

As with all of the internal organs, systemic sclerosis can affect the heart. 

It is therefore, crucial for the heart to be monitored at initial diagnosis, as well as, follow up, continued monitoring.    

In my view, for the best patient care, an early diagnosis  at an expert specialist centre  is paramount for life survival.  

 

I detailed more about heart involvement on Day 16 of my Scleroderma Awareness Month Campaign 2016.    

 
In the film ‘The Wizard of Oz’, the tin man sings ‘if only I had a heart’. 

Of course, I must mention my global ‘tin man awareness persona'.   







This tin man is living the dream, nurturing her heart, being a rare disease patient advocate


Rare Disease UK parliamentary reception 2016

2.3.2016 Rare Disease UK Parliamentary reception

However, the Pandora’s Box  of my symptoms have kept me occupied with my dental involvement recently.  

 
Gum recession can be experienced causing dental involvement requiring tooth extractions and increased susceptibility to infection, aided by a continual dry mouth. 

Shrinkage to the soft tissue around the mouth and lips, causes thinning to the lips and makes mouth opening very difficult.     




DAY 18 Scleroderma Awareness Month 2016, I detailed more about this.

I am extremely grateful to my dentist Dr Andrew Booth and Louise Doran  for their continued patience and expertise. 

I have dental check ups every 6 months, combined with hygienist appointments every 3 months. I have difficulty holding a tooth brush due to the physical limitation in my hands and fingers. 
 
This very important symptom of scleroderma, dental / mouth involvement, is most definitely a current unmet clinical need.   



I am devastated to have had 3 tooth extractions due to scleroderma. However, on the bigger picture scale, I know that this is a small irrelevance, compared to some of the organ devastation which other patients experience.  


Sadly, I am not able to attend the 5th World Systemic Sclerosis Congress which starts in Bordeaux, tomorrow. It has been my personal goal / gold medal, since the 1st  Congress, to attend. 

But, this Scleroderma Olympian  has had to accept that further training is still required, for travel and nights away.  
 
The Congress provides a fantastic forum for anyone who has an interest in scleroderma. The most recent up to date developments, encompassing the entire disease landscape, are showcased. 

Research is the key. 

Abstracts from the 4th World Systemic Sclerosis Congress held in Lisbon, highlighted the many different areas which are being explored for research purposes.  


    
I am delighted to have recently become a Patient Research Ambassador for the Dermatology and Musculoskeletal departments at the Royal Free Hospital   



2018 Key Dates include The Family Day, Scleroderma Unit on the 19th May.   



I will be celebrating my 20th year of being a patient at the Unit – I very much hope that you will join me?!    

 

In the meantime, Rare Disease Day February 28th, is only 2 weeks away.  

 
  
The theme to this years Rare Disease Day is Research.   

2017 Vlog - Research 
 
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 Campaign.  

Although, rare disease patients are few in number, eg. 2.5 million scleroderma patients worldwide (as by 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.  


I will be taking part in a live Twitter feed on the 27th February, highlighting the importance of medical research to the rare disease patient.  

 
Please join me: @SclerodermaRF @cosmicfairy444
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.   

‘If only we had more research’….  

Wishing you a heart-felt Valentine’s Day, loving life, feeling good.   

#SclerodermaFreeWorld #RaynaudsFreeWorld  






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


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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