Wednesday, 11 October 2017

Living the dream- Raynaud's Style, Nicola Whitehill. Raynaud's Awareness Month, October 2017. Scleroderma, Autoimmune Rare Disease.


Living the dream- Raynaud's Style, Nicola Whitehill.


Raynaud's Awareness Month, October 2017.

Scleroderma, Autoimmune Rare Disease.


Living the dream- Raynaud's Style, Nicola Whitehill.


Raynaud's Awareness Month, October 2017.

Scleroderma, Autoimmune Rare Disease.


Sunday, 1st October, saw the start of #RaynaudsAwarenessMonth 2017. 

As scleroderma patients, we know all too well, how debilitating and painful the symptoms of Raynaud’s can be. 

Along with, the symptom control of the ‘added extras’ which a lack of blood supply can cause to the scleroderma patient - digital ulcers, calcinosis, to name but a few.   



Every patient who kindly took part in my global patient profile Campaign 2017, for Scleroderma Awareness Month 2017, reported Raynaud’s to be problematic and difficult to manage for them.  

 


Some fast facts about Raynaud’s: 

Nearly every scleroderma patient will present with Raynaud’s symptoms, with some patients reporting their Raynaud’s symptoms as their initial symptom to their scleroderma diagnosis. 

Raynaud’s is the narrowing and constriction of the blood vessels to the extremities, hands and feet, as well as, other body parts.



Raynaud’s can present on its own, where it is known as 'Primary', as can be seen with Jane, and Libby, or it can be ‘Secondary’ to another diagnosis, for example, scleroderma. 

Raynaud’s is ‘secondary’ in other autoimmune patients, for example, Lupus, Sjogrens.  Debbie.

As well as, patients who have worked in an industrial environment, for example, vibration white finger, and a patient whose body has been subjected to intense hypothermic conditions, for example, military operational personnel.


Back to my Raynaud’s reality  

My Raynaud’s sensitivity is so severe that an attack can be induced by me just moving from one room to another, indoors! 

My symptoms are easier to manage by avoiding any temperature change. 

Should I have to go out, I must wear the appropriate clothing. 

My inner ‘Bond Girl’ absconded years ago, with me being forced to wear Ugg boots and clothes even in the summer.

Hottest day of 2013, I have to wear Ugg boots and gloves.
sunny autumn day 2016
On the 27th September I had the pleasure of attending my monitoring check up appointment with my hero, world expert, Prof Chris Denton, at the Scleroderma Unit in London. 

The effort of moving my 'tin man' body for this 12 hour BIG day out takes weeks of advance preparation, as well as recovery. 

I still remain in the ‘fragile zone’. 

However, it is always an honour and an extremely humbling experience to attend the Scleroderma Unit, and meet with other patients- 

A huge thank you to Deani

As well as, continue to impress Prof Denton with my symptom reversal after 20 years, from first having heard those life changing words ‘You have scleroderma and Raynaud’s’. 

Initial Diagnosis.  



I was delighted that my trip co-incided with a lovely, warm 20degree Celsius autumn day, in London. 

This enabled me to have my photo taken for a second, with me wearing just my t shirt, without me ‘losing’ my blood circulation to my hands or feet, outside of the main front entrance, to this global expert specialist centre.

I had 2 fleece jumpers, and a waterproof with me, and I was wearing my winter ‘biker Ugg boots’, with thick thinsulate socks. And of course, my gloves. 

27.9.17

30.11.16 - Eskimo outfit


For my best Raynaud’s symptom management, I have found that 'prevention is better than cure'. 

Indeed, there is no cure, with various drugs being used to open the blood vessels and thereby lowering blood pressure. 

The only medication which I take is Bosentan 125mg twice a day, which has reduced my digital ulcer frequency.  

After my consultation, I went to visit Dr Kevin Howell, who celebrates his 25th anniversary of working for the NHS this year. 

Dr Howell is a world expert on Raynaud’s and every patient who visits the Unit will be familiar with his horrendous bucket of ice cold water test, upon their initial visit.  



It is 19 years since I originally delved my hands into his bucket and I still cringe at the excruciating pain which this caused, evoking a Raynaud’s attack to my hands.  

 


This equipment photographs the thermal (heat) emitted from the body part of interest. 

The image below shows the heat transmitted by a normal, non Raynaud’s individual, following the ice bucket hand challenge, compared to that of a Raynaud’s patient- seen in the central image and right hand image of the frame. 

 


A specific camera, a capillaroscopy machine, is then used to assess any permanent damage to the capillaries and blood vessels. 

Read more, here.   

We desperately need a cure for Raynaud’s. #RaynaudsFreeWorld  

Living the dream, Raynaud’s and scleroderma style.  


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   

To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here 

To read My ‘Invisible Disability’ experience, Click here


Please DONATE to help fund medical research into the cause and cure for Raynaud's, at the Raynaud's Unit, The Royal Free Hospital, UK.

All of your monies will be used for medical research purposes only, lead being, the world trail blazer Dr Kevin Howell.   

Dr Howell and I, Sept 2017




#RaynaudsFreeWorld #RaynaudsAwarenessMonth

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




Living the dream, hoping for a cure ....

 


Click here for Twibbon 



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

The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, 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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