Sunday, 16 April 2017

Seasonal Change: Autumn. Raynaud's, Scleroderma, Autoimmune Rare Disease - Nicola Whitehill

Seasonal Change: Autumn 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld  




 
 

Most / ALL scleroderma patients will experience Raynaud’s, the narrowing of blood vessels, as a secondary symptom. 

Raynaud’s can sometimes present as the diagnosing feature of scleroderma, however, this was not the case for me. 

Tight puffy fingers and intense lethargy along with difficulty in swallowing were my initial symptoms. See more, here

Day 4 of my June Scleroderma Awareness Campaign 2016. 
 

 

The 1st September is recognised as the change in season, as by, the meterological calendar. Here in the northern hemisphere the season has now changed to autumn, with spring having arrived in the southern hemisphere.

Even though the warmer summer months bring along a marginal easing in some of my scleroderma and raynaud’s symptoms, combined with additional ‘summer symptom’ emergence, my heart still stinks somewhat at the thought of returning to the ‘eskimo months’.

I use this term, as I spend the colder seasons wearing clothes similar to an eskimo. 

Wearing so many clothes- I have more layers than an onion, with my inner Bond Girl, vanished into oblivion!

I am, however, delighted for my southern hemisphere fellow patients, that they can now start to emerge from their winter hibernation, and in particular, my brave scleroderma patient friend Silvana!

I wrote about ‘The Magic of Summer’, including the added extra scleroderma symptoms seen with an increase in the weather temperature.  

I also discussed in detail the dedication and commitment required, to attempt to keep symptoms at a manageable level in 'The Scleroderma Olympian'. 

One of my biggest health challenges currently, is the management of my Raynaud’s involvement. 

I see colour changes in various body parts should I experience the smallest change in temperature, including my nose, ears, hands, and toes. 

 
 

The wind can also trigger a Raynaud’s attack for me, as well as, cause severe ear ache which goes all of the way down my jaw line. 

I have a selection of hats, scarves, balaclavas and gloves in an attempt to minimise any potential Raynaud’s trigger by way of the weather. 

I wear gloves and Ugg boots all year round. 




 


The most sensible solution for me, is to remain indoors as much as possible. 

Thereby, avoiding any triggers, by remaining in a cosy, expensive centrally heated environment. This is my reality. 

Even indoors, I can experience a Raynaud’s attack by going into a different room which may be a slightly lower temperature. 


In 2003, I lived in Fuerteventura in the Canary Islands, for five months, to investigate if a warmer temperature and climate would help improve my symptoms. 

Which they did, but unfortunately, most places were air conditioned, which makes for a Raynaud’s playground!

When preparing food which has required prior re-fridgeration, I will remove the food from the chiller and then leave it on the counter for ten minutes or so, to remove the ‘straight out of the fridge’ chill factor.  

I am unable to hold anything which has come straight out of the fridge, as this would induce a Raynaud’s attack in my fingers. 

I am not able to hold a glass which has ice in it, although, I do make an exception for a champagne glass filled with Laurent Perrier Rose champagne!

I discussed Raynaud’s prevalence in more detail, Day 7   




As well as the Management of Raynaud’s and the differing treatment options used here in the UK. Click here   


 

For scleroderma patients, it really is advisable to try and be at the top of your game in relation to Raynaud’s management, as the loss of blood to the extremities during an episode can make scleroderma skin, prone to digital ulcers.

The pain of digital ulcers and their management should be made into an Olympic event for the scleroderma Olympian, as there are no words to describe accurately (even for a professionally qualified advocate such as myself!), the excruciatingly painful experience, that digital ulcers bring.

Thankfully, due to diligent discipline on my part combined with bosentan 125mg twice a day, continuously since October 2012, I no longer experience digital ulcers with the frequency and severity which I used to. 

Believe me, the experience makes you want to make sure, that you do not make yourself susceptible to ulcer heaven / personal nightmare. See Day 9   




And, Day 24   



 
One of the few highlights of my scleroderma and raynaud’s patient experience has been to be a member of the medical team who compiled the NHS England guidelines for the management of digital ulcers. See more, here

Sadly, there is currently no cure for either Raynaud’s or scleroderma. 

The treatment options target symptom suppression only, as the cause still remains a scientific mystery. 

Although, stress is recognised as an inducer of Raynaud’s.

To view:

the UKSSG management of digital ischaemia in scleroderma, Click here

the UKSSG Management of Raynaud’s in scleroderma, Click here

the UKSSG Digital Ulcer Management recommendations, Click here  


The fact that Raynaud’s can be seen in other autoimmune conditions, as well as present on its own in patients with no autoimmune involvement, shows that its commonality can be maximised for global research investment and improved treatments, for all of the affected patient populations.

Being house bound due to severe Raynaud’s, is certainly no easy feat for the scleroderma Olympian. ……Living the dream, scleroderma style, hoping for a cure soon. 


The hottest day of 2013, wearing Ugg boots and gloves to minimise Raynaud's attack - Nicola Whitehill




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



  

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. 

For optimum patient care, 3 hallmarks preside:







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

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.  


Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here    
 


100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You. 

  

  
Last Update: Feb 2020.       


Seasonal Change: Autumn 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld  









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