Saturday, 26 May 2018

Scleroderma Awareness Month, JUNE 2018. Raynaud’s, Autoimmune, Rare Disease



Scleroderma Awareness Month, JUNE 2018 
Raynaud's, Autoimmune, Rare Disease

1st June is the start of Scleroderma Awareness Month, with the 29th June being World Scleroderma Day.

This is OUR opportunity to showcase the rare disease, scleroderma, to the World. In the hope to raise awareness of this health reality, 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.  

2017 Flashback
2016 Flashback 

Sadly, this Scleroderma Olympian did not make it to the Scleroderma Unit Family Day on the 19th May at the Royal Free Hospital, London.

As heart wrenching as it was, I had to make the executive decision that I was not physically able to attend this informative annual event. This is due to a combination of current health issues, which would most certainly be exacerbated by the physical exertion of a BIG day out.

My body is still recovering from my shingles outbreak at Christmas, and remains in the ‘fragile zone’. Along with the Pandora’s Box continuing to bring unwelcome surprises.

My Raynaud’s sensitivity keeps me under house arrest all year round. By staying at home, I can attempt to minimise the number of daily attacks by maintaining a constant, surrounding temperature. 

The digital ulcer which appeared in March, on my right index finger, still remains in situ, along with the continual, agonising pain.

Even after 20 years, the reality of living with this ‘fun snatcher disease, continues to be a constant symptom juggling, management challenge.

My diary is kept busy with the multiple medical appointments.

For me, managing my symptoms, combined with fatigue, mobility challenges and my nutrition / diet regime is a full time job!   

Michelle, Prof Denton, Debby (thanks to Michelle for the photo)

I was very disappointed to have missed Prof Chris Denton presenting a plaque to Debby, the late, very brave, Kevin’s wife, and Michelle, their daughter.

Debby, her family, friend Ryan and other friends, organised a charity golf day last summer.

An amazing total of £2000 was donated for medical research at the Scleroderma Unit, The Royal Free Hospital. 

The plaque is to be placed on the side of a specialised freezer unit used for medical research, which the donation money helped to purchase.

Huge thanks and eternal gratitude go to Debby and Ryan for such a kind and generous donation.

Due to the success of the day, the event is to be held as an annual extravaganza, in Kevin’s memory. 


I had the pleasure of meeting Kevin, at the Scleroderma Unit, several months prior to his passing. We were at the medical imagery department, having photographic images taken of our disease progression.

Seeing the tightness of Kevin’s skin, took me back to my initial year of diagnosis, 1997.

I remember showing Kevin that I could now outstretch my arms and my skin was slowly regaining its elasticity.

We joked together that, at least we now had a ‘claim to fame’, as Prof Chris Denton had requested the images, with view for future use within a hardback educational book about scleroderma.

This aspect of fellow patients dying from their disease progression, is exceptionally heart breaking and hard for me, to take in, and of course, my prayers are with their families.

However, I know that I am blessed to have made it to my 21st year.

This super charges my personal efforts in utilising my skills in the best way which I can to help achieve the / my ultimate dream – a Scleroderma Free World. 

The Awareness Month of June, along with World Scleroderma Day, 29th June, are our golden ticket / opportunities to making the ultimate dream, a reality – a Scleroderma Free World.

This year, 2018, an online Facebook event has been created for 29th June, World Scleroderma Day by UK patient Lizzy.

Liz and I have shared some of our creations which we have previously made for awareness purposes, or, for fundraising monies / donations.

We hope to collect fellow patient creation images, and combine them all together, making a video, similar to the global patients video.

Here is my self made pattern and creation:  

Please get involved and share your photos!
  
Living the dream, scleroderma style.
          
Follow: 

Facebook Page: Raynauds Scleroderma Awareness Global Patients

Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld



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. Thank You. No wages / admin costs.   




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


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