Sunday, 11 June 2017

Week 1 Scleroderma Awareness Month 2017. Patient Profiles Campaign. Raynaud's, Autoimmune Rare Disease. Nicola Whitehill.

Week 1 Scleroderma Awareness Month 2017

Patient Profiles Campaign  

Raynaud's, Autoimmune Rare Disease 
 


Week 1 Scleroderma Awareness Month 2017

Patient Profiles Campaign  

Raynaud's, Autoimmune Rare Disease



June is Scleroderma Awareness Month and 29th June is World Scleroderma Day. 

On the 1st June I launched my Scleroderma Awareness Month 2017 ‘Patient Profiles’ campaign. We are now a week into the campaign. 

In this article I hope to provide a resume of the information shared so far, along with the current research situation in relation to treatment options and strategy for such.  

Further to this year’s Rare Disease Day theme being ‘Research – where possibilities are limitless’, I chose to further this theme, for this year’s Scleroderma Awareness Month campaign.   

All in all, I feel extremely blessed, as this Autumn, I will be celebrating my 20th year anniversary since hearing those life changing words ‘You have scleroderma’. 

Accompanied with, ‘You will be in a wheelchair by Christmas’, and ‘You are looking at a maximum of 15 months’. 

I detailed as to why research is important combined with my experience in a previous article, here
   
Being a long term patient, living with a ‘stable’ form of the disease, where symptom management makes for a full time job, medical research into the cause and cure of this ‘life hijacker’ disease is the golden light, at the end of a very long and dark diagnostic tunnel, in my view.  

However, it is unlikely that the discovery of a cure will be of a direct benefit to me, since I am living with the aftermath of an aggressive form of the diffuse type. 

I am forever grateful for the medical expertise of the superhuman scleroderma trailblazers, Prof Dame Carol Black and Prof Chris Denton, who stopped my disease progression, further to me gaining their medical opinion, in December 1998.   

I still remain in a state of euphoria, having been told by Prof Chris Denton almost 19 years later, in November 2016, that my ‘Skin is now cured from scleroderma’, Click here.   

Especially as, when I first dragged my tin man body to the Scleroderma Unit expert centre, for the first time, in 1998, I was unable to stretch my arms due to skin tightening.  

I also had skin tightening and itching to my entire body – feeling as though my skin had ‘shrunk in the wash’. 

This is a most horrendous feeling, and one which, I struggle to articulate.  

My body has shown that a return to healthy normal skin can be achieved, further to an aggressive form of the disease being halted, by way of chemotherapy and  immunotherapy intervention.   

I show that the disease process can be halted and eradicated, if diagnosed early enough, whereby treatments still remain an option, and no internal life threatening damage has been caused.   

By putting the patient profiles information together, not only does the content show how breath takingly, awe inspiring and strong, these individual patients are, in living with their daily reality, but also, the best approach for scleroderma and Raynaud’s disease management, on a global scale.   

The plethora of unmet clinical needs for this patient type is also illuminated, with a common thread running throughout- an urgent need for investment in clinical research as to the cause and cure. I have detailed more about unmet clinical needs, here   

When I first thought about the campaign, I had no idea as to how humbling the entire experience would be for me personally, connecting with fellow patients across the world, all sharing the same vision #SclerodermaFreeWorld.   

I also thought that scleroderma had left me tear-free years ago, not just from my Sjorgren’s overlap, but from, there just not being any tears left in me, as I was all cried out from the entire scleroderma ‘not-so fun bus’.    

However, reading fellow patients stories along with their current realities, certainly reopened my tear floodgates, as well as, evoked some of my personal memories from the ‘early years’.  

Albeit, I know that my scleroderma and Raynaud’s experience has been a breeze compared to that of some of my fellow patients.    

2017 INDEX Scleroderma Awareness Campaign Patient Profiles Click here    

The cause as to why my body wanted to do this to itself, remains one of my personal billion dollar questions, making me dedicated to using the remainder of my time here, in pursuing. In the hope that the #SclerodermaFreeWorld dream becomes a reality.     

Thank You for all of your support so far. Please comment below.   

Over the course of Scleroderma Awareness Month, I will be highlighting the current unmet clinical needs with the current medical research understanding as published within The Journal of Scleroderma and Related Disorders, (JSRD).  

Living the dream, Scleroderma style

#SclerodermaFreeWorld #RaynaudsFreeWorld
#RareDisease #Hope #Belief   

Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates    

Please DONATE to help fund medical research at The Scleroderma Unit where 100% of all of your monies will be used for medical research purposes only. Thank You. 
 


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


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