Tuesday, 25 April 2017

Nemesis Season: Winter. Raynaud's, Scleroderma, Autoimmune Rare Disease. Nicola Whitehill

Nemesis Season: Winter 
Raynaud's, Scleroderma, Autoimmune Rare Disease


 


Here, in the northern hemisphere, we are in the midst of winter. 

For me, in an attempt to minimise my Raynuads symptoms, hibernation began in October. 

This entails being under house arrest, unless I really do need to go out.   



Such ‘special days’ out are reserved for medical appointments and juicing ingredient re-stocks (living the dream, scleroderma style).  

I wrote about the full time job of managing my Scleroderma symptoms, here

As well as, I detailed my ‘Scleroderma diet’, here

I have learnt from experience, over the course of the last two decades, that my Raynaud’s symptoms are best managed by maintaining a constant temperature around me, as much as possible. 

In addition, to wearing multiple layers of thermal garments and heatwarmer accessories, making for the desertion of my inner Bond Girl persona, years ago.


September 2017 marks my 20th year anniversary since diagnosis, whereby I was given a fifteen month prognosis by my diagnosing doctor, who led my care for the first twelve months of diagnosis, before I changed to Prof Denton and the Scleroderma Unit at The Royal Free Hospital, and to whom I eternally grateful, having now reversed my skin involvement back to healthy skin. Read more, here

I have tried all of the medications currently licensed and prescribed for Raynaud’s, with little clinical affect, other than intense headaches, dizziness and nose bleeds. 

I have been taking Bosentan 125mg twice a day, continuously, for the last four years, and have seen a marked, and most welcome, improvement with the reduction in digital ulcers I now experience. 

I am extremely grateful that my ulcers did not develop into gangrene or tissue death resulting in amputation, which I know for some patients, this is their Raynaud’s reality.

Unfortunately, my Raynaud’s remains extremely sensitive, even with taking Bosentan. 

I can experience an attack which compromises of colour changes (blue, white, black, red) to my hands and feet, accompanied by intense muscle spasms throughout my entire body. 

This is a most unpleasant, horrendous and painful experience, making for this social butterfly being transformed into a confined eskimo Michelin Man, in an attempt to reduce the attacks. 

The level of tiredness which follows an attack is beyond exhausting. 

Raynaud’s can present on its own as well as secondary to another diagnosis, such as Scleroderma, where it is known as ‘secondary Raynaud’s’. 

There is currently no cure to this extremely debilitating and painful condition, requiring much needed financial investment into medical research to improve the understanding of what causes the blood vessels to spasm, as well as, what biological processes need to be activated to prevent it. 

Further to the success of the Show Your Colours (SYC) for Raynaud’s event in October, Raynaud’s Awareness Month, myself and the SYC Raynaud’s team have set up a  Just Giving page for the Raynaud’s Unit at The Royal Free Hospital. 

100% of the fundraising monies and donations will go towards medical research led by Dr Kevin Howell and Prof Denton, who are world leaders and authorities in Raynaud’s. 



I detailed further, the medications and management of Raynaud’s in the UK, here
as well as, I detailed my temperature sensitivity, here


This is going to be a very busy year for raising awareness. Increased commitment for medical research investment will provide the eureka moment needed for unlocking the Raynaud’s and Scleroderma code.

With the Scleroderma and Raynaud’s patient in the meantime, living in the hope that, that moment will happen in their lifetime. 


Let’s make this happen…. #SclerodermaFreeWorld #RaynaudsFreeWorld

Here is a visual for awareness events which you may be interested in…. Rare Disease Day is February 28th, with ‘Medical Research’ as the theme. Follow the Facebook page for regular updates.



This is my first article for 2017, and so, I would like to take this opportunity to wish you a very Happy year ahead, feeling good….. Living the dream, Scleroderma style.




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


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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