Sunday, 5 June 2016

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

DAY 5  Scleroderma Raynaud's 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

See Day 4 Scleroderma Awareness post, here  

The initial blood test taken by the 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. 

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.
To read my articles:
The importance of an early diagnosis click here 
the role of medical research click here
the importance of expert specialist centres click here
diet and nutrition click here
taking part in research trials click here
the UK guidelines for management and treatment of Scleroderma click here
my skin is cured from scleroderma click here 
BSR and BHPR guideline for the prescription and monitoring of non-biologic disease-modifying anti-rheumatic drugs, Raynaud's, Scleroderma, Rare Disease click here  

EULAR guidelines for treatment of systemic sclerosis scleroderma, click here  

Please DONATE to help fund medical research at the Scleroderma Unit at The Royal Free hospital where 100% of your donation will be used to fund vital medical research. Thank You.
Living the dream, scleroderma style, hoping for a cure
#SclerodermaFreeWorld #RaynaudsFreeWorld

29th June World Scleroderma Day. Read more here
Scleroderma Awareness flashback 2016. Read more here 

Scleroderma Awareness 2016 Campaign Index. Click here 

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Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates 

To view the Facebook page Scleroderma Awareness Month 2016 campaign images Click  here

To view Facebook page Photo Album ‘Wellbeing Side to living with Raynaud’s and Scleroderma’ Click  here

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