Saturday, 9 June 2018

Debbie King, Canada. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.

 Debbie King, Canada. 
Scleroderma Awareness Month 2018. 
Raynaud's, Autoimmune Rare Disease.

DEBBIE KING, CANADA
Name:           Debbie King

Location:       Vancouver, Canada

Diagnosis:    Systemic Scleroderma

I was diagnosed around 2009/10.


Presenting symptoms?

My hands - the fingernails were sort of warped and shrinking if that makes sense?!

My original rheumatologist dismissed my self-made diagnosis of scleroderma with a blunt – ‘don't be ridiculous you do not have scleroderma’. I no longer see him.

Current Medications:

Prednisone.

Hydrochlorquine.

I have just started injecting methotrexate once a week.


3 biggest challenges due to your diagnosis?

My biggest challenge by far is the digital ulcers.

They constantly getting infected, are extremely painful, and flat out exhausting. 

I was doing ok until a nasty ulcer on my pinky finger showed up and I have a bone infection.

I had a picc line put in last Tuesday. Today will be day 16 iv therapy. I am not super happy about this, but the hope is to save my finger from being amputated.





Tips for living for me, anyways are:

Be a warrior, cry when you have to, but do NOT give in to this disease. I refuse to.     

3 wishes for the future? 

Find a cure for this debilitating painful disease.

Educate those that know little about it.

Just hang in there. 

Life is good, take time to rest when you need it.

Do not ignore what your body is telling you! 

JUNE 2017.


2018 UPDATE:

My symptoms haven’t changed too much over the years.

The biggest pain in the a** is the Raynaud’s syndrome that affects the skin and nails on the fingers and toes, very painful.

My skin is very tight and I have the hands of a 90 year old, they are so wrinkled and funny looking.

But it could always be worse couldn’t it ? Lol.

I am still on the same meds:

5 mg prednisone daily.

200 mg hydrochlorquine.

2 tablets daily of oxycodone for pain.


RESEARCH 2018

I have never been in a trial and would I ? Yes possibly, it would really depend on what was offered and what are the risks that go along with it.

I notice a lot of trials are offered to American residents and I am Canadian and have not seen too much offered.

If I ever do, I would certainly be interested in what is offered, but also, I am a little sceptical. 


IN BETWEEN MEDICAL APPOINTMENTS:

I try to keep busy with my family.

Big thanks go to Debbie for sharing her scleroderma experience for Scleroderma Awareness Month. 

 




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. 

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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