Friday 17 June 2016

DAY 17: The Lungs, Scleroderma Awareness Month 2016

Scleroderma Awareness Month 
Raynaud's, Autoimmune Rare Disease  


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 Jatto, Facebook ‘Me and Sclero, 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.

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 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. 


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        


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. 


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

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. 


Last Update: April 2018

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