Sunday, 16 April 2017

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

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



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 excrutiatingly 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

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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