DAY 17 Scleroderma Awareness Month: THE LUNGS

DAY 17 Scleroderma Awareness Month: THE LUNGS

Day 17 Scleroderma Awareness month

DAY 17  Scleroderma Awareness Month: THE LUNGS

As highlighted in the diagram above, lung involvement in scleroderma patients can be a life threatening complication, if not diagnosed and managed early on in the disease process.

Lung involvement, compared to other organ involvement, currently, carries the highest threat to life for a scleroderma patient, having overtaken kidney involvement. Improved treatments and understanding have improved the long term outlook for the patient with kidney involvement. Day 15 Scleroderma Awareness Month focussed on the kidney, to read my blog post for that day, click here.

One of the main diagnostic tests carried out to confirm a scleroderma diagnosis, is a lung function test. To see more about this, where I discuss in detail the tests, Day 5  Scleroderma Awareness Month: Diagnostic tests, click here.

Huge thanks to Sarah, and her Facebook page ‘Me and Sclero’ for sharing her experience of taking a lung function test. Here is the link to a recent blog about Sarah here.

The diagram at the top of this post shows an X-ray, whereby fibrosis to the left lung can be seen, identified by the extra cloudy part to the base of the lung, as indicated. Thankfully, the UK patient, Alex, who kindly shared her image for awareness purposes, is able to just about manage her symptoms without the use of an oxygen cylinder.

In the event that treatments are not effective and irreversible damage has been caused, a lung transplant is a possible final option. I blogged about the Swiss patient Alice, who underwent a double lung transplant in 2012, and was running a marathon, two years later. To read this post, click here.

Recently, Nepalese patient Prasha underwent a double lung transplant in New York and is making amazing progress with her return to wellbeing. Please follow Prasha’s Facebook page ‘Hope for Prasha – New Lungs’ and twitter @hopeforprasha.

As highlighted earlier within this blog post, lung fibrosis/pulmonary hypertension complications in the scleroderma patient are currently the biggest contributor to a life threatening situation.

To view the UK Scleroderma Study best practice guidelines, click here.

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.
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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.

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