|May 2017 Total|
Friday, 17 June 2016
DAY 17: The Lungs, Scleroderma Awareness Month 2016
DAY 17 Scleroderma Awareness Month: THE LUNGS
As highlighted in the diagram, 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.
One of the main diagnostic tests carried out to confirm a scleroderma diagnosis, is a lung function test. Day 5 Scleroderma Awareness Month: Diagnostic tests where I discuss the tests in more detail.
Huge thanks to Sarah, facebook ‘Me and Sclero’ click here, for sharing her experience of taking a lung function test.
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 wrote about the Swiss patient Alice, who underwent a double lung transplant in 2012, and was running a marathon, two years later. 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’ here and twitter @hopeforprasha
As highlighted within the second paragraph above, 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
2017 Update on Prasha: She is most certainly a scleroderma medical miracle. She is infinitely grateful to her donor for her new lungs and is currently undergoing a rigorous rehabilitation programme.
I will be forever in awe with the inner strength and tenacity which the superhuman lady, Prasha, has shown throughout her recovery process. She is now able to walk about, is at home with her family, but, her symptom management remains more than a full time job, for her.
I very much look forward to meeting Prasha, as well as Alice, at a global scleroderma meeting at some point in the future.
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
29th June World Scleroderma Day. Read more here
Scleroderma Awareness flashback 2016. Read more here
Scleroderma Awareness 2016 Campaign Index Click here
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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