DAY 5 Scleroderma Awareness Month – Diagnostic Tests

DAY 5 Scleroderma Awareness Month – Diagnostic Tests

Day 5 Scleroderma Awareness month

DAY 5  Scleroderma Awareness Month

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 for this type of patient. And no two scleroderma patients are truly alike when it comes to symptoms.

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 (see Day 1  Scleroderma News Awareness post click here), 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.

(See Day 4 Scleroderma News Awareness post, yesterday.)

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 15-month prognosis, and more devastatingly to me, as I did not believe the prognosis — to give up on my childhood 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 in Professor Christopher Denton.

Sadly, my 60 hour a week barrister role proved too much for my body.

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.

Having graduated with BSc Hons in Applied and Human Biology in 1995, I was working as a medical rep for Bristol Myers Squibb, when in 1997, aged 24, I was diagnosed with diffuse systemic sclerosis (scleroderma) and rayanuds and given a prognosis of 15 months, soon to be wheel chair bound. I was advised by my medical professional, at that time, to give up on my dream of being a barrister, and accept the diagnosis…… I did none of this! I changed my medical professional to international experts of the diagnosis (Dame Prof Black, and Prof Denton) and kept my dreams alive, qualifying as a practising barrister in March 2004. This prompted the medical decision to stop the 2g daily immunosuppressant routine of the previous 5 years, and unfortunately, within 8 weeks, I was forced to cease my 60hour working week and accept that the physical requirements of the role were too much for my body. I relocated to my family home town of Southport, UK. My full time job now, is to manage my symptoms to a controllable level. In 2013 I came out of the scleroderma closet to the world by way of the Daily Mail publishing my story with the headline ‘The Real Life Tin Man’ and since then I have devoted all of my spare energy to highlighting the plight of the scleroderma patient. In 2013 I became a patient advocate on the NHS England Clinical Reference Group for Specialised Rheumatology. I am honoured to have been a member of the clinical team who compiled the NHS England treatment guidelines for digital ulcers. In 2013, I also became a patient expert with the European Medicines Agency as well as Eurordis. In 2015 I was delighted to be a UK patient advocate for the FESCA World Scleroderma Day event held at the European Parliament: https://www.youtube.com/watch?v=KQimB_F2l_4 . I am wholly committed to improving the patient landscape which this diagnosis brings, and I feel very blessed that my symptoms are mild compared to other Ssc patients, whose voices, I hope to include also. Other than being a Ssc parrot, I enjoy relaxing with my dogs and anything which makes me feel good, as one day I want to be able to say I am scleroderma and raynauds free.
×
Having graduated with BSc Hons in Applied and Human Biology in 1995, I was working as a medical rep for Bristol Myers Squibb, when in 1997, aged 24, I was diagnosed with diffuse systemic sclerosis (scleroderma) and rayanuds and given a prognosis of 15 months, soon to be wheel chair bound. I was advised by my medical professional, at that time, to give up on my dream of being a barrister, and accept the diagnosis…… I did none of this! I changed my medical professional to international experts of the diagnosis (Dame Prof Black, and Prof Denton) and kept my dreams alive, qualifying as a practising barrister in March 2004. This prompted the medical decision to stop the 2g daily immunosuppressant routine of the previous 5 years, and unfortunately, within 8 weeks, I was forced to cease my 60hour working week and accept that the physical requirements of the role were too much for my body. I relocated to my family home town of Southport, UK. My full time job now, is to manage my symptoms to a controllable level. In 2013 I came out of the scleroderma closet to the world by way of the Daily Mail publishing my story with the headline ‘The Real Life Tin Man’ and since then I have devoted all of my spare energy to highlighting the plight of the scleroderma patient. In 2013 I became a patient advocate on the NHS England Clinical Reference Group for Specialised Rheumatology. I am honoured to have been a member of the clinical team who compiled the NHS England treatment guidelines for digital ulcers. In 2013, I also became a patient expert with the European Medicines Agency as well as Eurordis. In 2015 I was delighted to be a UK patient advocate for the FESCA World Scleroderma Day event held at the European Parliament: https://www.youtube.com/watch?v=KQimB_F2l_4 . I am wholly committed to improving the patient landscape which this diagnosis brings, and I feel very blessed that my symptoms are mild compared to other Ssc patients, whose voices, I hope to include also. Other than being a Ssc parrot, I enjoy relaxing with my dogs and anything which makes me feel good, as one day I want to be able to say I am scleroderma and raynauds free.

Leave a Comment

Your email address will not be published. Required fields are marked *