Monday, 21 January 2019

A New Year and New Challenges. Scleroderma, Raynaud's, Autoimmune Rare Disease. Nicola Whitehill.

 
A New Year and New Challenges.
Scleroderma, Raynaud's, Autoimmune Rare Disease.
#RaynaudsFreeWorld #SclerodermaFreeWorld 
blog.raynaudsscleroderma.co.uk

A new year is now upon us, with the seasonal holiday festive time a fond memory. 



As patients living with a chronic, progressive and degenerative rare disease, we know only too well that, there is no holiday from our daily myriad of symptoms. The holidays can be quite an isolating and difficult time, as often, it is just not physically possible to interact or 'join in'.

I am super vigilant with avoiding situations which could increase my risk of catching any viral or other infection.

Although I am now 14 years immunosuppressant and chemotherapy free, my immune system is still very weak. On a 'normal day', my body feels as though it has flu by way of my continual musculo-skeletal aches and pains.  


My 'tin man' body, along with chronic fatigue and mobility challenges, remain constant sources of frustration

Over here in the northern hemisphere we have entered into the season of winter. Winter is my nemesis season



Mentally and physically, this is the most challenging time of year for me. Video    




2018 was particularly challenging for me due to extra complications such as skin cancer, dental issues, calcinosis, and an index finger ulcer. I am still fragile from having started the year with shingles.   



These unmet clinical needs were replicated during my global patient profile campaigns for Scleroderma Awareness Month in 2017 and 2018.

Telangiectasia, sclerodactyl hands, and gastrointestinal issues were common symptoms among patients.  

Telangiectasia 18.9.18

I am delighted to have survived this Christmas without experiencing a medical emergency which required urgent medication.

For, last year, on Christmas Day, I developed a very painful shingles rash, covering my abdomen and back.

This has kept me under 'house arrest' for most of 2018. And, disappointingly, forced me to not be able to attend the annual family day at the Scleroderma Unit, The Royal Free Hospital in May.

I was disappointed to not meet the lovely family of the late Kevin East, RIP 5th Jan 1967 - 7th Jan 2016, who held a charity golf day, and fund raised £2000. 

As well as, I was disappointed to not be able to meet many other very kind and generous fundraisers for medical research at the Scleroderma Unit, and fellow patients. 

Saturday 18th May 2019 is this year's date for the annual event. 

Prof Chris Denton with Kevin's wife, Debby and Michelle, one of their 3 children

Please hold Kevin's family in your prayers at this time, for this is Kevin's anniversary time of year.

 
2018 I celebrated 20 years of being a patient at the Unit. 

I am eternally grateful to Prof Chris Denton and the NHS for keeping me alive

Sept 2017

I was also disappointed to not be able to attend the charity boxing match in memory of Chris Milan

RIP Chris
Huge thanks to Ben for raising an enormous £34,873.80, in memory of his dad, which will be used for medical research only, at the Scleroderma Unit. 



However, the holiday season did not allow me any respite with my scleroderma 'added extra' surprises. 

On Christmas Day, my right hand flared. This caused a huge lump of solid and liquid calcium to ooze. The pain was, and is, nausea inducing. My joints still remain inflamed, swollen and painful, with the calcium continuing to ooze.



I am right handed, and so, this new calcium challenge, really is on another level in terms of management. I am not able to stretch or move my hand without screaming in pain. I must avoid getting the area wet, in the hope, that the skin tissue does not become infected, thereby, heading into digital ulcer territory.

Overall, for optimal patient care, the following are essential: 

Medical “dream teams"



All I want for Christmas and for, every day, is: a scleroderma-free-world and a Raynaud's-free world.  



Medical research provides immense hope for this wish to be granted. Video



Now that I am blessed to be a long-term scleroderma survivor and scleroderma Olympian, I spend most of my spare time when not tending to my symptoms committed to the "SclerodermaFreeWorld" and "RaynaudsFreeWorld" wish.

2018, I was honored to have become a patient research ambassador with the National Institute for Health Research. (Here's a video, and here's a "Hall of Fame" article.)

I was also honoured to be appointed as a Patient Public Voice in the NHS England Clinical Reference Group for specialized dermatology.

This is in addition to my NHS England CRG specialized rheumatology role and my patient expert roles with the European Medicines Agency.

In 2019, I very much hope to combine these roles to do all that I can in helping to achieve the SclerodermaFreeWorld and RaynaudsFreeWorld wish.

I very much want to wish you a most prosperous 2019 and Thank you for sharing the same daily wish in 2019:

a scleroderma-free world
a Raynaud's-free world

Living the dream, scleroderma style. 

Follow: 

Facebook: Raynauds Scleroderma Awareness — Global Patients
Twitter: @SclerodermaRF and @RaynaudsRf
Use the hashtags #SclerodermaFreeWorld and #RaynaudsFreeWorld.  



Please donate to help fund medical research at the Scleroderma Unit of the Royal Free Hospital, London. 

One-hundred percent of raised funds will be used for medical research purposes only. Thank you.  
Please consider leaving a gift in your Will for medical research at the Scleroderma Unit. Thank You.   

 


Living the dream, scleroderma style. 




An edited version of this article was published here, in my Column with Scleroderma News. January 2019.   
 
 
To read my articles: 
 
Raynaud's
 
To view the UK treatment guidelines for Raynaud’s Phenomenon, Click here   

To view the EULAR treatment guidelines, Click here    
To view Thermograph Video, Click here   
To view Thermograph image, Click here   
   
My Raynaud’s reality, Click here   
 
The global Raynaud's trailblazer - Dr Howell and I, Sept 2017
 
To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here  
 
To read My ‘Invisible Disability’ experience, Click here  

  


Facebook Page: Raynauds Unit Royal Free Hospital
  
Twitter: @RaynaudsRf 


SCLERODERMA:

To read my articles: 

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- How to Diagnose, Click here    

This year, 2018, I am celebrating 20 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.  

Sept 2017

Prof Chris Denton and I, 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. Along with the Raynaud's world trail blazer, Dr Kevin Howell. 

I am truly humbled and inspired by their work ethic and commitment to their patients. 
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. Read more, here     

Global Patient Profiles Campaign 2018 Index, Click here

Global Patient Profiles Campaign 2018 Video, Click here   

2018 Scleroderma Awareness Raising and Medical Research, Click here  

Importance of Medical Research and Awareness Raising, Click here  

NIHR Video: 'My Experience of Clinical Trials', Click here    

Becoming a Patient Research Ambassador for the NIHR, Click here    
  
Week 3, 2017 Patient Profiles: Medical areas of current interest, Click here
Week 2, 2017 Patient Profiles: Progress in Medical Research, Click here 
Week 1, 2017 Patient Profiles: Introduction to multi complex disease, Click here 
Why I chose global Patient Profiles for my 2017 / 2018 Campaign, Click here 
 
2017 Global Patient Profiles Campaign Introduction, Click here 
 
'Being your own awareness advocate', Click here
 
Scleroderma Awareness Month Flashback 2017, Click here  
Scleroderma Awareness Month Flashback 2016, Click here  
My 2016 Scleroderma Awareness Campaign, A to Z: Scleroderma and Raynaud's diagnosis, Click here 
 
2016 Campaign Video, Click here   
 
March 2018 Autoimmune Disease Awareness Month, Click here    

 
World Scleroderma Day 2017, 29th June, Click here   
World Scleroderma Day 2016, 29th June. Origins of the date, Click here  
World Scleroderma Day 2015, 29th June. 

James Carver, myself, Prof Chris Denton
I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.  

I am immensely grateful to James Carver MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 

To view my article 'Why Global Collaboration is Important', Click here     

Research is the key. Abstracts from 2016 World Congress, Click here

Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   
Preamble - here
 
 
RARE DISEASE DAY:
The theme to 2018 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.
 
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, 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  
 
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here

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 overall: 
 
For optimum patient care, 3 hallmarks preside:



supported by a medicaldream team’ 
(expert specialist as the clinical lead).

Where, investment in medical research is crucial, to improve the day to day reality, as well as, the long term outlook for the entire global scleroderma community.  

Follow: 

Twitter: @SclerodermaRF  @RaynaudsRf  
 
 
#SclerodermaFreeWorld           #RaynaudsFreeWorld
#IamScience


 
   
#SclerodermaFreeWorld #RaynaudsFreeWorld 

 

January 2019. 
 
A New Year and New Challenges.
Scleroderma, Raynaud's, Autoimmune Rare Disease.
#RaynaudsFreeWorld #SclerodermaFreeWorld


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