Monday, 12 June 2017

Nicola Whitehill, UK. June Scleroderma Awareness Month 201. Raynaud's, Autoimmune Rare Disease. Patient Profiles DAY 12.

Nicola Whitehill, UK

Patient Profiles DAY 12

June Scleroderma Awareness Month 2017 

Raynaud's, Autoimmune Rare Disease


Nicola Whitehill, UK
TODAY is my birthday!! 

Wehoo... I have made it to 44! 

At 24 years of age, I was told that I had scleroderma and I was looking at a 15 month prognosis.....

Name:           Nicola Whitehill 

Location:       Southport, UK   


Diagnosis:     Diffuse cutaneous systemic sclerosis, Raynaud’s   


Year of diagnosis:    1997

Age at diagnosis:     24   


Where / who diagnosed you?

September 1997 - Consultant Rheumatologist, Queen’s Medical Centre, Nottingham.  

December 1998 – Dame Prof Carol Black, Scleroderma Unit, The Royal Free Hospital, London.


What were your presenting symptoms?  

Tight skin on my arms, legs, hands.

Swollen puffy fingers with no strength to undo jam jar or bottles.

Difficulty in swallowing and opening mouth.

Overall fatigue and feeling ‘out of sorts’.


How long did it take for you to be diagnosed after first symptoms?   

I had an initial blood test with my GP which came back negative for arthritis, which surprised me at the time, as my symptoms were similar to arthritis.   

A second more specific blood test revealed the presence of RNA polymerase III.  

I was then referred to the Consultant. This process probably took 6 weeks.   

Read more about my initial diagnosis, here   


Current reality  

Living the dream scleroderma style!  

 

I am now 13 years chemo – immunosuppressant free, with my only medication being bosentan 125 mg twice a day, which has made a remarkable improvement on my digital ulcers.    

I was delighted to be told last year, by my hero, Prof Chris Denton, that my skin is now cured from scleroderma. Read more, here    

I have annual monitoring tests for my heart and lungs. Read more, here    

It is a full time job managing my symptoms, read more, here    

My Raynaud’s sensitivity keeps me under house arrest all year round in an attempt to minimise the attacks. Read more, here 

Gloves and Uggs all year round


I feel lucky that my level of disease is ‘stable’, even though, I am living with the damage which the disease, at its most aggressive, caused.    
 

Please describe your current symptom involvement and management, including any treatments taking and taken:  

Raynaud’s / digital ulcers. Bosentan 125mg bd.  

GERD. Specialised diet and omeprazole in emergencies.  

Musculoskeletal pain. Time manage, co-proxamol in emergencies.  

Fatigue. Time manage, rest when have to.   

Calcinosis. Minocycline had little effect.   

Mobility. Time manage, and be realistic.   

Dry mouth. Drink lots of water.   


I have written about  

Fatigue, here     

Mobility, here   
 



‘Living the dream as the real life tin man’, here   

‘My job today is to simply get better’, here

‘Ah, great another day to spend in bed, said no Raynaud’s scleroderma patient, ever’, here

Diet, here     


What are your 3 biggest current challenges due to your diagnosis?    

Unpredictability of the flare up of symptoms.  

Calcinosis, Raynaud’s, MSK pain, GERD.

Tin man body.   

 
What are your 3 top tips for living with your diagnosis?   

Make sure that you have the best medical team around you, Click here  

I wrote about the importance of expert specialist centres, here  

The importance of an early diagnosis, here    

Taking part in clinical trials, here 

Focus on the things which you can do, and which make you feel good. 
 
Scleroderma loves stress, so eliminate stressful, toxic situations and people from your life.  

Be independent of the good opinion of others. 

This is your body and you know what is best for you. 

If you need to rest, do. You are not being lazy, your body needs to heal. 

Be gentle with yourself and if you are having a worse day than ‘normal’, respect your symptoms, in the hope that tomorrow, you may feel better.   

I set up my cosmicfairy444 blog to share some of my coping strategies, Click here 



What are your 3 wishes for the future?     

#SclerodermaFreeWorld   

Cause and cure to be discovered in my lifetime. 

I focussed on some of the current clinical unmet needs in my article for Rare Disease Day 2017, where the theme was ‘Research where possibilities are limitless’, here    

My body to return to 100% wellbeing.    

Prof Chris Denton does not retire !!    


I have been truly blessed with how my 20 year scleroderma experience has turned out compared with how it was supposed to turn out, as by my diagnosing doctor. 

I am eternally grateful to the superhuman beings Prof Chris Denton and Dame Prof Black, whose medical expertise allowed me to realise my childhood dream of qualifying as a barrister, and although I am not in full time practise, I am able to transfer my skills to the #SclerodermaFreeWorld plight.  

This ‘coming out of the scleroderma closet’ only happened in October 2012, when I was invited to be part of a panel of patients to present to the global GSK workforce, at the UK headquarters.  

Sadly, one of my fellow patients, Penny Paterson is no longer with us. I am honoured to have met with her, and laughed with her on that day, as to our daily realities. Scleroderma makes you have to tweak your sense of humour!  

The other patient on the stage was Kim Fligelstone, who I would like to take the opportunity to pay tribute to, for all the tireless effort which Kim puts into helping fellow patients. As well as, for being a UK voice on the global scleroderma stage, at FESCA, EULAR, WSF meetings and the like.   

I was delighted to have been used as a pin up girl at the GSK UK hq, some months later, following the presentation. 

May 2015 GSK UK hq

The following summer, the Daily Mail printed my story, here, and my public, global awareness 'persona' began.   

In 2015 I was delighted to have been part of the European cohort who presented at the European Parliament on World Scleroderma Day. 

Huge thanks to Jimmy Carver for making this event possible, in memory of his late wife, Carmen, who sadly, passed from scleroderma, following a very brave battle.   


To view the presentation, Click here       



To read more about Living the dream being your own Raynaud’s Scleroderma rare disease patient advocate, Click here    

RIP Anne  31.5.42 - 2.10.14

I am eternally grateful to the Raynaud’s and scleroderma trailblazer Anne Mawdsley, who is sadly no longer with us.   

Anne lived with the diagnosis for over 30 years and was a living example to us all, as to how she managed her symptoms.   

In Anne’s memory I set up the Raynauds Scleroderma Awareness global patients social media platforms. Read more about Anne, here


I chose the theme of patient profiles and research for this years Scleroderma Awareness Month campaign, as I truly believe that my personal experience was made possible, for me to still be here to be the scleroderma parrot which I have become, further to me gaining an early-ish diagnosis and attending an expert specialist centre by way of the Scleroderma Unit, The Royal Free Hospital.  

I therefore feel passionate that every patient presenting with scleroderma symptoms is diagnosed early enough, whereby life threatening damage is minimised. 

As well as, it should not be a postcode / ZIP code / Country lottery as to the best management and treatment of scleroderma.  


I am a patient voice on the NHS England CRG for Specialised Rheumatology and expert adviser to the European Medicines Agency (EMA).    

I have written articles for RareDisease UK and the European Rare Diseases Organisation (EurorDis), as well as my blogs here, and my column with Scleroderma News.   

Rare Disease UK Parliamentary Reception, Rare Disease Day 2016

I am a member of the World Scleroderma Foundation.   

I am also a member of the Pro-Vide Law team, here   


I would like to thank all of the global scleroderma community for their support with this campaign – sharing the same vision: 

A Scleroderma Free World.    




To read more about why I chose ‘Patient Profiling and Research’ as the focus of my 2017 campaign, Click here    

Why Research and Patient Profiles? Scleroderma Awareness Month 2017, Raynaud's, Rare Autoimmune Disease, Click here   

2017 INDEX Scleroderma Awareness Campaign Patient Profiles, Click here    


INDEX to Scleroderma Awareness 2016 Campaign, Click here     


June 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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