Sunday, 23 April 2017

The Full Time Job of Symptom Management. Scleroderma, Raynaud's, Autoimmune Rare Disease. Nicola Whitehill

The Full Time Job of Symptom Management 
Scleroderma, Raynaud's, Autoimmune Rare Disease




Every scleroderma patient presents with differing symptoms.  

No two patients present with the exact same identical set of symptoms.

Diffuse / systemic scleroderma affects the entire body, making for a multi-disciplinary medical team paramount, for best patient optimum care. 

Attending and preparing for medical appointments, is a full time job, even when the symptoms have stabalised.

Over here in the UK, we are blessed with an extremely committed and dedicated NHS scleroderma medical team. I wrote about my ‘scleroderma medical dream team’, here

I wrote about my annual monitoring tests, here

Not only does a scleroderma diagnosis bring a change in the body’s capacity to function, but also, a drastic change in lifestyle, by way of no longer being physically able to participate in tasks and hobbies which were once, a source of joy and remuneration.

On a personal level, there is not a day which goes by where I do not think of my ‘old life’ as a practising barrister, appearing at various crown and county courts, representing and advising clients.

However, being realistic, I must respect my symptoms, in an attempt to minimise their severity. 

This includes my daily skincare routine, which has contributed to my recent medical breakthrough ‘my skin is cured from scleroderma’, as well as, my daily juice smoothies and strict diet, Click here


On Dec 8th 2016, I was live on the Scleroderma News facebook page, talking about my recent skin reversal, as well as, I shared some of my scleroderma survival tips. 

This was my live debut, and although my phone signal brought about an earlier finish than planned, I very much enjoyed the experience, and I was delighted with the fantastic audience who joined me live – Thank You

Here is a recording

My sensitivity to the slightest change in temperature with my Raynaud's symptoms, makes me very much under house arrest, in an attempt to prevent a Raynaud's attack. I wrote about this, here

Having been a scleroderma patient for 19 years now, it is my view, further to my own personal experience, combined with my observations of the global scleroderma community, that, Scleroderma turns ‘social butterflies’ and the ‘life and soul of parties’ into shadows of their former, older self.

This is not just exclusive to scleroderma, this is a reality of the chronic illness patient and any patient, whether it be flu or any other transitory ailment, whilst the body recovers.

Sadly, for some scleroderma patients, the disease process is too aggressive for their body to recover from irreversible damage which then becomes life threatening. 

This is why, an early diagnosis is essential for a more favourable outcome to the scleroderma patient. I wrote more about this, here


On October 31st 2016, the UK Government published an open consultation on ‘Work, health and disability green paper: improving lives’.

A ‘green paper’ is a preliminary report of government proposals that is published in order to provoke discussion. 

The Government is inviting comment on its Work, Health and Disability Green Paper, which,

‘outlines how disability or a health condition should not dictate the
path a person is able to take in life – or in the workplace.

What should count is a person’s talents
and their determination and aspiration to succeed’.

This runs until 17th February 2017.  

I would urge every UK patient and non-patient alike, to add their view to this consultation.

Read more, here

For most scleroderma patients, the physical disability aspect of their diagnosis is one of many challenges which their daily reality poses. 

The hidden, sometimes invisible, challenges include chronic fatigue and pain. 

Both, can not be underestimated with the devastation that they can bring, alone or combined, on a day to day basis, to the scleroderma patient. 

I wrote about FATIGUE, here, PAIN and HAIR LOSS, here

Since it is the holiday time season, I would like to take this opportunity to wish you and your family a very happy festive time, feeling good. 

Unfortunately, the full time job of being a scleroderma patient does not allow for annual leave or a ‘holiday’ from the symptoms, yet. 

Investment in medical research combined with patient interaction by way of spreading awareness and involvement is key for a permanent scleroderma holiday of the future.

My Christmas wish is that 2017 will bring about the reality of #SclerodermaFreeWorld #RaynaudsFreeWorld.

Dreaming big, with my job today ‘to simply get better’… 

Living the dream, scleroderma style. 



An edited version of this article was published here, in my Column with Scleroderma News. 
December 2016. 

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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