Monday, 19 June 2017

Christine Wilson, UK. June Scleroderma Awareness Month 2017. Raynaud's, Autoimmune Rare Disease. Patient Profiles DAY 19

 
Christine Wilson, UK

Patient Profiles DAY 19

June Scleroderma Awareness Month 2017 

Raynaud's, Autoimmune Rare Disease 




Name:  Christine  Wilson

Location: King’s Lynn, Norfolk, England, UK 


Diagnosis:   

Year of diagnosis:    April 29th 2007 

Age at diagnosis:     54 


Where / who diagnosed you?   

Mr David Williams clinic, by a lady who was working for him.
 
Queen Elizabeth Hospital, King’s Lynn  


What were your presenting symptoms?  

I was working, and then went off sick with Rheumatoid  arthritis  symptoms, as a carer I knew what Rheumatoid symptoms were like.

But I had cold white fingers. 

So I made a list - Swollen feet and hands, bit of pain, fever, tiredness, unwell.

I thought my calcinocis was a chillblain. 


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

I got the Rheumatoid bit right, but have an overlap. That day, I had x rays on my chest, hands and feet. I was then referred  to OT.

The pain in my feet means I use a wheelchair if my husband needs to take me shopping.

I went off sick Feb 2007, when I could not grip with my hands plus they were white. My feet at the end of shifts, were a nightmare, plus my knees swelled. 

I asked to be referred in Dec 06 but my symptoms were not that bad. I had to wait 4 months with my GP trying to move my appointment forward. 

I was then diagnosed in June 2007 with Rheumatoid Arthritis overlap with  scleroderma and Raynaud’s.  


Current reality:

2017  

I have coped by going on methotrexate, which works wonderful.

Swimming, keeping walking, keeping active, plus fully retired since 2006.

In this time, I have had skin problems, one digital ulcer and reflux problems, and MRSA. 

10 years on, I have big problems with Sjogren’s  which might be primary. 

I also have big problems with my mouth and teeth.

My skin is tighter and I have developed Meniere’s disease (affects the inner ear).


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

Walking slowed, everything has slowed down 

Cataracts  

Lots of hospital appointments, including dental


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

If you can keep going, live life to full   


What are your 3 wishes for the future?  

I wish the scleroderma would  just halt, so I can reach old age nicely.     


Huge thanks go to Christine for sharing her scleroderma reality and experience for scleroderma awareness month.   


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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