Sunday, 15 April 2018

Medical Research and Awareness Raising, Scleroderma, Raynaud's, Autoimmune Rare Disease. Nicola Whitehill





Medical Research and Awareness Raising 
Scleroderma, Raynaud's, Autoimmune Rare Disease
 
Spring has reluctantly arrived over here in the UK. An increase in the temperature is most welcome, even if it is only marginal, due to my location!

However, similar to all of my fellow patients around the world, to make it out of winter without any body crisis by way of flare ups or the like, is quite frankly, a miracle.

Even with continual house arrest, commencing in autumn, I have still not managed to escape the wrath of the cold winter months, unscathed.

Winter really is, my nemesis season



This winter, 2017 – 2018, I have had numerous health challenges in addition to my scleroderma and Raynaud’s ‘carte blanche’ symptoms.  

Even after living with this diagnosis for 21 years, it still continues to amaze me with the surprises which it can ‘present’, and not in a good way!

So far this year, my Pandora’s Box of symptoms have included Shingles, my Bowen’s disease skin flare / follow up.

As well as, dental inflammation and more recently, a very nasty digital ulcer on my right index finger (chief typing finger).

Sadly, as I could no longer cope with the pain, I had to take a week’s course of flucloxacillin, which has triggered my GERD symptoms.    

However, when I went to see the wonderful, global scleroderma trailblazer, Prof Chris Denton, for my routine appointment recently, he was and remains, delighted with my return to well being progress.

My consultation appointment is the only time, when I am content to be described as ‘stable’ or ‘normal’, and, voiced by a person whose opinion I respect and value …haha. 

I feel truly blessed to be under the care of such a scleroderma pioneer medical expert. 


I will be celebrating my 20th year of being a patient at the world expert Scleroderma Unit, The Royal Free Hospital, next month, at the annual Family Day, Saturday 19th May 2018.

This is held within the atrium at the hospital and is free for anyone with an interest in scleroderma and / or Raynaud’s, to attend.

I have written extensively over the course of the last 2 years with my Column here at Scleroderma News, as to how crucial an expert specialist centre and multi disciplinary medical ‘dream team’ are, for best practice and management of this autoimmune, rare disease. 

When I was given those three life changing words ‘You have scleroderma’, back in the autumn of 1997, aged 24, I was also told that I was looking at, ‘a 15month prognosis, at best’.

At that time, both of my parents were very supportive in attending the never ending medical appointments, which followed.

In December 1998, I dragged my tin man body to the Scleroderma Unit at The Royal Free Hospital. Extensive tests followed to ascertain the severity of the disease progression.

During the course of these tests, my parents would kindly accompany me, and at that time, I would have never have believed, that 20 years later, I would still be attending the Unit, having now, survived them both, and, my 'skin cured from scleroderma'.

My recent clinic appointment was the first time that I have been to the Unit, in my ‘orphan’ capacity. Thankfully, thoughts of my reality were suppressed by the very welcome company of Lauren and Christine from the National Institute for Health Research, for the duration.

This was in ideal opportunity for me to discuss my new role as Patient Research Ambassador for the Royal Free Hospital dermatology and MSK departments. As well as, Lauren and Christine, are better looking accompanies than my parents haha!

I also had the pleasure to meet with fellow patient Jeanie, ‘Miss Universe’ who I have ‘known’, via Facebook, for a while!

Here is a photo of us all.. Living the dream.. 



I am very much looking forward to developing my new role, especially given that an investment in medical research is crucial to improving the scleroderma, Raynaud’s, autoimmune Rare Disease patient experience.  


In the meantime, awareness as to our daily plight and health challenges, provides a perfect spotlight for the multitude of our clinical unmet needs.

Huge thanks go to ALL of the global patients, video, who kindly took part in my Autoimmune Disease Awareness Month, #ADAM patient profiles campaign.

The campaign showed that for best practice and care:


Expert Specialist Centres 

Access to Innovative Medicines

Are imperative.
     
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. Thank You. 
#HOPE  



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


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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