Tuesday, 12 June 2018

Nicola Whitehill, UK. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease

Nicola Whitehill, UK. 
Scleroderma Awareness Month 2018. 
Raynaud's, Autoimmune Rare Disease

Nicola Whitehill, UK
TODAY is my birthday!!

Wehoo... I have made it to 45!

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.


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 14 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 in 2016, 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.    
 

My current symptom involvement and management:

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     


My 3 biggest current challenges:    

Unpredictability of the flare up of symptoms.  

Calcinosis, Raynaud’s, MSK pain, GERD.

Tin man body.   

 
My 3 top tips for living with this 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
 


My 3 wishes for the future?     

#SclerodermaFreeWorld. #RaynaudsFreeWorld.   

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.





June 2017.

2018 UPDATE

My symptoms remain the same, albeit ‘stable’, and remain a full time job for optimum management.

This year, I have had a few ‘added extras’ thrown into my symptom mix:

Shingles
PTSD
Bowen’s disease flare
Gum recession / loosening of teeth

Consequently, I have been, and remain, ‘grounded’ here in Southport, whilst I nurture my body, and rebuild my strength.  

Sadly, I missed out on the British Society for Rheumatology annual conference, held here on my door step, in Liverpool.

I also missed out on this year’s family day at The Scleroderma Unit, The Royal Free Hospital. This year being particularly special for me, as it is my 20th year of being a patient at this world class center of expertise.

However, during the last year, I have been delighted to have appeared in various local courts, upon special request, winning all of my cases.

This has not only been a great boost to my morale, but also, helps me gauge as to how realistic it is for me to return to my 60 hour a week role as a practising barrister. Sadly, this Scleroderma Olympian still has a lot of preparation training to do.


RESEARCH 2018

I have taken part in several clinical trials. I have written about them here and here.

I am honoured to have become a Patient Research Ambassador for the Royal Free Hospital.Video

I would most definitely encourage any patient, to engage in a clinical trial, which is held at a recognised expert centre. 

Fellow patient Jeannie (Miss Universe), Me, Christine and Lauren from NIHR, March 2018
Investment in medical research provides immense hope that our day to day reality can be improved, whether that is by way of an improvement in medicines available, or, for the ultimate dream, of a cure being found.


IN BETWEEN MEDICAL APPOINTMENTS

I spend most of my time under house arrest in an attempt to control my Raynuad’s sensitivity.

I have various creative projects underway including knitting and paper art. 


I proof read various European Medicines Agency documents, eg. Patient Information Leaflets, as well as run my blogs and social media platforms.

As well as - Living the dream, scleroderma style, with the dream team.

Hoping that one day soon, the ultimate dream – a SclerodermaFreeWorld, becomes a reality. 





Current Unmet Clinical Needs 2018: 

CALCINOSIS, Click here  

GUM RECESSION, TOOTH EXTRACTS, Click here 

SOFT TISSUE, ULCERS, Click here  

TELANGIECTASIA, Click here 

SCLERODACTYL HANDS, Click here   

INVISIBLE DISABILITY, Click here 

RAYNAUD'S, Click here 

GASTROINTESTINAL, Click here



Prof Chris Denton presenting a plaque to Kevin's daughter, Michelle, and wife, Debby, for funds raised in Kevin's memory for medical research at the Unit. Thanks to Michelle for the photo.
  
'Scleroderma Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click here  
Global Patient Profiles Campaign Index, Click here
Importance of Medical Research and Awareness Raising, Click here
NIHR Video: 'My Experience of Clinical Trials', Click here 
Week 3, 2017 Patient Profiles: Medical areas of current interest, Click here
Week 2, 2017 Patient Profiles: Progress in Medical Research, Click here 
Week 1, 2017 Patient Profiles: Introduction to multi complex disease, Click here
Why I chose global Patient Profiles for my 2017 / 2018 Campaign, Click here 
 
2017 Global Patient Profiles Campaign Introduction, Click here 
 
'Being your own awareness advocate', Click here
 
Scleroderma Awareness Month Flashback 2017, Click here 
Scleroderma Awareness Month Flashback 2016, Click here 
My 2016 Campaign, A to Z: Scleroderma and Raynaud's diagnosis, Click here 
 
2016 Campaign Video, Click here 
March 2018 Autoimmune Disease Awareness Month, Click here 
World Scleroderma Day 2017, 29th June, Click here 
World Scleroderma Day 2016, 29th June. Origins of the date, Click here 
World Scleroderma Day 2015, 29th June, Click here 


To view my article 'Why Global Collaboration is Important', Click here

All patients included within the global patient profiles campaign, highlight the URGENT need for an investment in medical research, as well as: 


Early Diagnosis 
Expert Specialist Centres 

Access to innovative medicines 

ALL being, crucial factors for best practice management and care.  

 
To read my articles:
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        

 

Raynaud's, Click here   
 
This year, I am celebrating 20 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. 
Sept 2017

Prof Chris Denton and I, 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. Read more, here
 
For latest updates follow: 
 
Facebook Page:
Twitter: @SclerodermaRF  @RaynaudsRf  
#SclerodermaFreeWorld           #RaynaudsFreeWorld
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: June 2018
 

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