Monday, 21 January 2019

A New Year and New Challenges. 2019. Scleroderma, Raynaud's, Autoimmune Rare Disease. Nicola Whitehill.

 
A New Year and New Challenges. 2019.
Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#RaynaudsFreeWorld #SclerodermaFreeWorld 


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. 
  

 





My / 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


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 SclerodermaFreeWorld and a RaynaudsFreeWorld.  

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 specialised dermatology.

This is in addition to my NHS England CRG specialised 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 SclerodermaFreeWorld  

and 

a RaynaudsFreeWorld 


Living the dream, scleroderma style.  


Follow: 

Facebook: Raynauds Scleroderma Awareness — Global Patients 

Twitter, Instagram, YouTube: @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.   


 




An edited version of this article was published here, in my Column with Scleroderma News. January 2019.  

  


  

Scleroderma Family Day 2020

25th Anniversary Meeting

The Atrium, Royal Free Hospital, London, NW3 2QG

Chair: Professor Chris Denton

PROVISIONAL PROGRAMME


09.30 – 10.00           Registration and Coffee

10.00 – 10.20           Welcome                                                   Dame Carol Black
                                                                Prof Chris Denton & David Abraham

10.20 – 10.40           What is a Biopsy?                                    Dr Kristina Clark

10.40 – 11.05           Dental aspects of Scleroderma            Prof Stephen Porter

11.05 – 11.25           Gastrointestinal problems –                       Dr Fiza Ahmed
shedding new light on old problems 

11.25 – 11.50           Pulmonary hypertension and the heart Dr Gerry Coghlan

11.50 – 12.15           Scleroderma cohort studies –                  Dr Francesco 
                                 ‘Learning from our patients’                     del Galdo

12.15 – 14.15           LUNCH BREAK – see below  

14.15 – 14.45           25 years of progress –                          Prof Chris Denton
from ‘black box’ to ‘positive trials’

14.45 – 15.15           International speaker –                            Dr Madelon Vonk
                                 Scleroderma Management in Netherlands

15.30                        Raffle


Lunchtime Discussions Groups / Demonstrations include:

Clinical Trials                                                                  Rachel Ochiel and team
National Institute of Health Research                            Christine Menzies
Drug Information / monitoring                                        Pharmacy
Massage                                                                         Keith Hunt MBE
Pulmonary Hypertension Education / nursing            Sally Reddecliffe/Adele Dawson
Rheumatology Laboratory                                          Research Laboratory Staff
Scleroderma Education / Nursing                          Louise Parker/ Joseph Cainap
Thermography                                                                Dr Kevin Howell
SRUK                                                                             Ollie Scott
Sjogren’s syndrome                                                       British Sjogren’s Society 


To Read My Articles:  

Gift in My Will, Click here 

Planning for the Future, Click here  

 


Rare Disease Day:   

Rare Disease Day 2020:  

  

Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here  


 

Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt  here   


 
Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click here  

  


 
Rare Disease Day 2019: Leaving a Legacy Gift, Click here       



Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here  

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2017 Rare Disease Day Medical Research  


2016 Rare Disease Day Patient Voice   

2016 Rare Disease UK Parliamentary Reception       

  

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.


To read about medical research at the scleroderma unit, 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. 

INVESTMENT in MEDICAL RESEARCH is CRUCIAL.   


To read my articles:  

Celebrating 20 years of being a patient at the Scleroderma Unit, Click here

2019 New Challenges, Click here
 
NIHR Video: 'My Experience of Clinical Trials', 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  

2018 Scleroderma Awareness Raising and Medical Research, Click here    


SCLERODERMA:

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        

'All you need to know', 2016 Awareness Video, Click here    

Global Patient Profiles 2018 Video, Click here    


Unmet Medical Needs, Click here     




Calcinosis Video, Click here    


The scleroderma tooth fairy, Click here     


Skin Cancer and scleroderma, Click here   

 

Sept 2017

Prof Chris Denton and I, Sept 2017

June 2019



This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.  

Read more, here.    

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 original diagnosing doctor, that I was looking at a 15month prognosis. 
 


  

Chat Magazine May 2019

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     

  

World Scleroderma Day 2018, 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, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 

Raynaud's

October:  
Raynaud's, Click here  
 
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   

Invisible Disability Awareness Video, Click here

To read My ‘Invisible Disability’ experience, Click here   

50 Shades of Blue, Click here



 

For latest updates follow / subscribe:  

@SclerodermaRF 

@RaynaudsRf 

Twitter, Instagram, Blogger, YouTube, Facebook Page:

#SclerodermaFreeWorld           #RaynaudsFreeWorld    #Research  



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. 

  

  
Last Update: Feb 2020.       


A New Year and New Challenges. 2019. 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#RaynaudsFreeWorld #SclerodermaFreeWorld 









 

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