Tuesday 27 June 2017

Sarah Jatto, UK. June Scleroderma Awareness Month 2017. Raynaud's, Autoimmune Rare Disease. Patient Profiles DAY 27

Sarah Jatto, UK

Patient Profiles DAY 27

June Scleroderma Awareness Month 2017 

Raynaud's, Autoimmune Rare Disease
Sarah Jatto, UK

Name:           Sarah Jatto  

Location:       London    

Diagnosis:    Systemic Scleroderma  

Year of diagnosis:    2009  

Age at diagnosis:     19    

Where / who diagnosed you?  

Rheumatologist at Chelsea & Westminster Hospital   

What were your presenting symptoms? 

Swollen fingers

Swollen face

Hypo depigmentation to my skin

Tightness of face, mouth, torso and arms


How long did it take for you to be diagnosed after first symptoms? Please describe your experience:

It took 2-3 years to be completely diagnosed.  

When patches appeared on my face my doctor treated it as a “virus” from the sun and gave me Canesten. When I realised the “virus” patch was not healing I revisited my GP. Upon arriving, she noticed my swollen face and hands, sent me for a blood test and later a vascular surgeon.     

Current reality  

9 years of having Scleroderma and I feel it has stabilised

Please describe your current symptom involvement and management, including any treatments taking and taken:  

I still suffer with Raynaud’s and, severely. 

I have contracted fingers, hypo depigmentation and scarred lungs. 

I currently take Methotrexate, prednisolone, folic acid, omeprazole and fluoxetine.  

What are your 3 biggest current challenges due to your diagnosis? 

Getting dressed

Acid reflux 


What are your 3 top tips for living with your diagnosis?   

Take one day at a time

Keep stress levels down

Rest often

What are your 3 wishes for the future?   

Find the cause of Scleroderma

Find a cure

For patients to live happily ever after Scleroderma.

Scleroderma is very unpredictable, it takes a lot of listening to your body, understanding it, knowing your boundaries and not surpassing them.       

Huge thanks go to Sarah for sharing her scleroderma reality and experience in such detail, for scleroderma awareness month.     

To follow Sarah’s ‘Me&Sclero’ Facebook Page, Click here   

You can also follow 'Me&Sclero' on Twitter and Instagram.  

To read more about why I chose ‘Patient Profiling and Research’ as the focus of my 2017 campaign, Click here    

Why Research and Patient Profiles? Scleroderma Awareness Month 2017, Raynaud's, Rare Autoimmune Disease, Click here   

2017 INDEX Scleroderma Awareness Campaign Patient Profiles, Click here    

INDEX to Scleroderma Awareness 2016 Campaign, Click here     

June 2017. 

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   

Becoming a Patient Research Ambassador for the NIHR, 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    

Diet and nutrition, Click here     

Raynaud's, Click here    

World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, Click here   

Why Global Collaboration is important to the Rare Disease Patient, 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  

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. No wages or admin costs. Thank You.


Last Update: April 2018

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