Tuesday, 11 April 2017

Living the dream, BEing Your Own Raynaud's, Scleroderma, Autoimmune, Rare Disease Patient Advocate - Nicola Whitehill



Nicola Whitehill (diagnosed in 1997, aged 24) and the Dream Team

Living with a rare disease brings along many challenges, not least, becoming an expert in your own medical condition. 

The rare disease patient’s holy grail is to actually receive a diagnosis, whereby a treatment care plan can then be put together, which at best, will be focussed on symptom suppression, since there is no known cure. 

I have always considered myself to be a ‘lucky scleroderma’ patient in that, I have minimal internal organ damage, with my Gastro-Intestinal system and my Musculo-Skeletal systems taking the biggest hit. 

Read more, Click here 


I detail more of my 'tin-man' like symptoms, here

My diagnosing Doctor told me back in 1997, that I would be in a wheelchair by Christmas (3 months away, at that time), I was looking at 15 months as a prognosis, and to give up my idea of being a barrister (professional advocate). 

He then prescribed me a cocktail of immunosuppressants and steroids. 

I describe more about this, here
 
A year later, I changed my medical care to that of the global expert and trailblazer Prof Chris Denton at The Royal Free Hospital in London, and almost 18 years to the day from when I first dragged my painful, stiff, swollen body there, Prof Denton confirmed to me that my skin is now cured from scleroderma.  Read more here

In 2015 I presented ‘Systemic Sclerosis – the patient’s perspective’ at the annual British Society for Rheumatology conference. To view the presentation, Click here

However, it really is a fulltime job to manage my symptoms, with me using all of my ‘spare time’ devoted to the Raynaud's, scleroderma, autoimmune, Rare Disease, awareness plight.

I have now been writing my column at Scleroderma News for a year.  

I receive no payment for my articles and set up my 'Just Giving' page, in the hope to generate funds specifically for medical research at the Scleroderma Unit led by Prof Chris Denton – to whom I am eternally grateful to, for his medical expertise and superhuman approach, to being of service to his patients and the global scleroderma community.


Column Index 

As I detailed and set out at the start of my Column last year, it was, and still remains my intention to make the content of my articles educational and informative, from not just the raynaud's scleroderma patient perspective, but also from the rare disease patient’s perspective in general, combined with being a voice for patients by presenting the true reality of our daily experience when living with this body hijacker. 

I very much hope that I have achieved this with the content of my Column, as well as, with the content of this article.

During the first few years of having been told those 3 words, ‘You have Scleroderma’ I was not overtly fluent at speaking about the disease, and was more focussed on having my head in law books so that I could pass my exams. 

I would occasionally give radio interviews or magazine interviews, usually further to the persuasion from Anne Mawdsley, the Founder and President of the Raynaud's and Scleroderma Association, as it was then. 

Sadly, Anne is no longer with us, having lost her battle with Raynaud's and scleroderma in 2014 after 30 years of living with the diagnosis.

Anne Horton Mawdsley, campaigner and fundraiser, born 31 May 1942; died 12 October 2014
The entire global Raynaud's and scleroderma community are extremely grateful to Anne for her tireless fundraising and awareness raising, and for all that she did to improve the lives of patients with this disease. 

Last year, I started my ‘Raynauds Scleroderma Awareness Global Patients’ Facebook page, in Anne’s memory. The Facebook Page is linked with this blog.


As well as, the Google Plus community



During the summer of 2013 my 'incognito' status came to a sudden end, by way of me sharing my 'tin-man' like symptoms.

Although this aspect to scleroderma puts me under house arrest, along with my Raynaud’s super-sensitivity, I have been actively following and participating in the work of the APPG on Rare, Genetic and Undiagnosed conditions here in the UK, chaired by Ben Howlett MP.

 
Nicola Whitehill, Ben Howlett MP, Dr Larissa Kerecuk
This photo was taken last year, at the Rare Disease UK Parliamentary reception for Rare Disease Day 2016. It still remains a favourite and honour for me to have been in such good company. 
 
Dr Larissa Kerecuk is a true superhero. She is the Rare Disease Lead at Birmingham Children's Hospital. 

Nicola Whitehill, Ben Howlett MP
I wrote about the day, here 

I have taken part in several live Twitter sessions, using my @cosmicfairy444 alter ego, which Ben and Rare Disease UK have hosted live.




In essence, the golden hallmarks for the rare disease patient best practice care are: 

Speedy access to innovative medicines to prevent life threatening damage  


The  UK Rare Disease Strategy sets out further details.

28th March 2017, was a very encouraging day for the UK rare disease community. 

Following a debate led by Ben, Philip Dunne MP, Minister of State for Health has announced that NHS England will develop an implementation plan, by the end of the year, as to its commitments as outlined in the strategy.

To read the full transcript of the debate, Click here

To watch the televised recording starting at 16.25, Click here






I highlighted the importance of the strategy, here, within one of the articles which I wrote for Rare Disease Day 2017, the theme being 'Research - possibilities are limitless'. 

I focussed on the 'Raynaud's scleroderma patient unmet research needs', here, within my second article, for honouring Rare Disease Day 2017.








March is Autoimmune Disease Awareness Month #ADAM





All in all, on a day to day level, every rare disease patient is co-erced in to a world where being their own advocate is not a choice, it is a necessity for survival and improvements.




Nicola Whitehill 30.11.16 'My skin is cured from Scleroderma', Royal Free Hospital




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