Sunday, 5 June 2016

DAY 5: Scleroderma, Raynaud's, Diagnostic Tests, Scleroderma Awareness Month 2016, Autoimmune Rare Disease



DAY 5: Scleroderma Raynaud's Diagnostic Tests

DIAGNOSTIC TESTS 

Early diagnosis is crucial to prevent life threatening damage to the scleroderma patient. 

For, if the disease has progressed to a level causing irreversible damage, even a stem cell transplant or organ transplant (for the most severely affected patients), may not be an option, to this type of patient. 

And, no two scleroderma patients are truly alike with the symptoms, which they present. 

Early diagnosis is also important in reducing the life changing disability which the symptoms could cause. 

As, early medical intervention to stop the disease from progressing through the body is extremely important to prevent long term effects.

The ‘Early Diagnosis’ requirement is a hallmark for all rare diseases, with   Expert Specialist Centres  shown to offer the best practice care.

A combination of several diagnostic tests must be carried out to confirm a positive scleroderma, systemic sclerosis diagnosis.

The results of which, will indicate the type of scleroderma,  Day 1  as well as, the level of internal organ damage, if any.

These results will then determine the best practice patient care for that individual, including treatment options, if this is still a viable option for the patient.

In the UK, my diagnostic journey commenced with me arriving at the GP surgery, presenting with swollen, puffy fingers which were painful and stiff, along with difficulty with swallowing, dry mouth and an overall feeling of exhaustion. 

Read more Initial Diagnosis 

Day 4 Scleroderma Awareness Month 2016. 

The initial blood test taken by my General Practice nurse, revealed no abnormalities, however, a further more specific blood test, focussing on circulating autoantibodies and in particular the Scl-70 autoantibody, returned a positive test. 

The ‘scleroderma patient’ experience began, September 1997. 

I was then referred to my local Consultant rheumatologist, who gave me a 15month prognosis, and more devastatingly to me, as I did not believe the prognosis- to give up on my dream of being a barrister. 

The following year, December 1998, I went to see Prof Dame Black and Prof Denton, at The Royal Free hospital in London, who then became my medical team, and to whom, I am eternally grateful for their expertise and dedication at keeping me around, enabling me to realise my childhood dream on March 1st 2004. On this date, I ceased the daily 2g chemotherapy regime of the previous 7 years. 

 As a ‘long term’ patient, it has brought huge comfort to me over the years, that I am under the care of one of the World’s leading medical experts in scleroderma, Prof Denton. 

To read my article 'Annual Monitoring / MOT of a Long Term Scleroderma Raynaud's patient' Click here

Sadly, my 60 hour a week barrister role proved too much for my body, due to the physical exertion required. I wrote about this in my 'Tin Man' article here

To read my article 'Ah Great, another day to spend in bed, said no Scleroderma Raynaud's patient' Click here

It is however my pleasure, that my professional advocate skills are now being put into use by way of being a professional expert patient for scleroderma, Raynaud’s and rare disease overall.  

~ living the dream, hoping for a cure. 


This article was originally published here  in my Column with Scleroderma News.  




An edited version of this article was published here, in my Column with Scleroderma News. 
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      

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       


Raynaud's, Click here    


World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, 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  

More unmet clinical needs  

Rare Disease Day 2016



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

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. Thank You. 
#HOPE 


 
Last Update: April 2018




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