Monday, 18 June 2018

Christine Wilson, UK. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.

Christine Wilson, UK.
Scleroderma Awareness Month 2018. 
Raynaud's, Autoimmune Rare Disease.




Name:  Christine  Wilson

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


Diagnosis:     Rheumatoid Arthritis overlap with  scleroderma and Raynaud’s.   

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 I 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.

2017 reality:

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. 

June 2017. 



2018 UPDATE:      

Diagnosis:

Pulmonary arterial hypertension associated with connective tissue disease.
Connective tissue overlap syndrome.
Rheumatoid arthritis.
Systemic sclerosis.
Hyperthyroid eye disease.
Raynaud’s.
Hypertension.
Hyperchosterolaima.
Degenerative lumber spine stenosis.
Iron deficiency.


SYMPTOMS:

Dry eye mouth - Sjogrens.
Stiff clicky wrists.
Breathless.
Teeth loose - lots dental work. Food gets stuck. Finding it hard to eat.
Stiff feet.
Mild squamous dysplasia of the mouth.
Low iron sometimes tiredness.
Bowel leakage (weakness).


MEDICATIONS:

Amitriptyline, Betahistine, Ferrous sulphate, Hydroxchoraquine, Folic acid, Calchew d3, Lansprazole, Simvastatin, Macictentan, Sildenafil, Levothyroxine eye drops, mouth wash.


RESEARCH 2018:

I did a Raynaud’s trial with my son in Pontypool University. I travelled 200 miles but my son, Jamie, lives in Wales.

The trial was about gloves. Jamie came with me. The scientist / Doctor, compared Jamie with me. It was about how long it took to warm up. The results were to help medical understanding and how to make gloves for patients.

I think really, that it didn't go well. They filmed a Raynaud’s attack, also. I came in from the cold, and had an attack.  

I have also, taken part in a few research questionnaires on line. One of which, was about well being.

I would like to take part in more research but I have asked, and nothing came of it. I think that it was forgotten.

I am unusual, so really, I should be asked to take part, plus I would recommend, for patients to take part in research.


IN BETWEEN MEDICAL APPOINTMENTS:

I am kept busy with: housework, garden, coffee with friends.

Holidays - anything of interest. Keeping warm.

How am I feeling? Well- Like an old 65 year old. I am fed up with my mouth and teeth.

I have had to give up swimming and driving because of my Meniers symptom of getting dizzy. Otherwise, I live life as full as I can.

Dog walking looking after my dog, Poppy. Dear little thing, came to us in January to live rest of her life at my house. She was my sister in law's dog, but she had to give her up. A hard decision, but the right one.

    

Huge thanks go to Christine for sharing her scleroderma reality and experience for Scleroderma Awareness Month.   

 
 
 
 
To read my articles: 
 
Current Unmet Clinical Needs 2018, Click here 
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. 

James Carver, myself, Prof Chris Denton

I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.  

I am immensely grateful to James Carver MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, 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        

Fatigue, Click here         

Mobility, Click here      

Diet and nutrition, 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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