Monday, 9 April 2018

The Fun Snatchers - Scleroderma, Raynaud's, Autoimmune Rare Disease.


Scleroderma and Raynaud’s - The Fun Snatchers   

Those three words, ‘You have scleroderma’….followed by, ‘and Raynaud’s’ have without doubt, life changing consequences, if not, life threatening consequences.   

In this article, I discuss the day to day impact which these three words have, in relation to the lifestyle adjustments and changes required, to respect the full impact of the symptoms. 

Paradoxically, hearing those words, actually come as a relief, to most scleroderma and Raynaud’s patients, as evidenced by my ‘patient profile combined with research campaign’, for June scleroderma awareness month 2017.  

I have written about my initial diagnosis and the importance of an early diagnosis, previously. 

As well as, my personal rationale for making the ‘patient profile combined with research campaign’, for June scleroderma awareness month 2017. Week 3.   

I am truly convinced that my personal 20 year experience of living with scleroderma and Raynaud’s, is contributed to me being diagnosed within a few months of my initial presenting symptoms, followed by a second opinion at the Scleroderma Unit expert centre, The Royal Free Hospital, 15 months later. 

Whereupon, I was subjected to a rigorous 18month chemotherapy regime which eventually stabalised my symptoms. With my ‘Skin now being cured from scleroderma’, 19 years later.  

After having been told ‘You have scleroderma’, I was then told that I was probably looking at a maximum of 15months, due to the aggressiveness with which the disease was attacking my body. 

At the time, 1997, I was working in the pharmaceutical industry as a medical representative, as well as, studying towards my barrister qualifications on a distance learning basis. I was advised to give up my dream of being a barrister and to accept my medical fate.  

 

Scleroderma and Raynaud’s the fun snatchers    

On 1st March 2004 I qualified as a self employed barrister, and stopped the daily 2g mycophenolate mofetil regime of the previous 6 years. 

I am now 13 years immunosuppressant / chemotherapy free. The only medication which I take is bosentan 125mg twice a day, along with Co-Proxamol analgesics for emergencies. 

Sadly, the physical requirements of the barrister role were too demanding on my scleroderma and Raynaud’s damaged body.  

Although my level of disease is stable, my day to day reality is dictated by my symptom demands caused by the damage from the scleroderma, when it was active. 

Namely, musculoskeletal pain, GERD involvement, calcinosis and I have extremely sensitive Raynaud’s.  
 
This combination of symptoms makes for easier management, by me staying at home as much as possible. In an attempt, to minimise severity, as well as, an attempt to prevent Raynaud’s attacks. 

I also have a strict diet.   


Hottest day of 2013 - I had to wear Ugg boots and gloves

Prior to my body developing scleroderma and Raynaud’s, I was a very outgoing social individual. Now, my social life, as well as my working / career life has been superseded by medical appointments taking priority in my diary and depleting my limited energy stores. 
 
I am a huge fan of Andy Murray, the UK tennis player, who sadly was not able to defend his Wimbledon title fully this year, due to a hip injury. 

I am sure, every scleroderma and Raynaud’s patient can relate to a similar intense disappointment and sadness at not being able to fulfil a desire, due to their body not being up to it.  
In particular, I am no longer able to play tennis, a sport which I very much enjoyed. 

Infact, all exercise is extremely challenging for my ‘tin man’ body. I have the utmost respect for my fellow patients who are still able to exercise.   

I have learnt, over the last few decades, to not focus on what I can no longer do, and focus on what I can do, and, on what makes me feel good.   



I have shared more of my coping strategies on my www.cosmicfairy444.blogspot.co.uk.   



So, although this party girl is no longer able to be so foot loose and fancy free, the party has been relocated to my lounge, with the best DJ, and no queue for the conveniences.
 


Living the dream, scleroderma style.

Please DONATE to help fund medical research at The Scleroderma Unit, The Royal Free Hospital, London where 100% of all of your monies will be used for medical research purposes only. Thank You.

#SclerodermaFreeWorld #RaynaudsFreeWorld
#RareDisease #Hope #Belief 

Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates 

 




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

More unmet clinical needs  

Rare Disease Day 2016



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. Thank You. 
#HOPE 


 

Last Update: April 2018




 

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