Sunday, 4 June 2017

Sarah Lloyd, UK. June Scleroderma Awareness Month 2017, Patient Profiles DAY 4, Raynaud’s, Autoimmune Rare Disease

Sarah Lloyd, UK

June Scleroderma Awareness Month 2017 
Raynaud’s, Autoimmune Rare Disease 


Sarah Lloyd, diffuse scleroderma patient, UK
Name:           Sarah Lloyd

Location:       Shaftesbury, North Dorset, UK

Diagnosis:     Raynaud's, MCTD, Systemic Sclerosis 

Year of diagnosis: 

Raynaud's & MCTD - Feb 1992

Systemic Sclerosis - Sept 2015

Age at diagnosis:

Raynaud's & MCTD - 26,

Systemic Sclerosis - 49   


Where / who diagnosed you?  

The Royal Free Hospital: Raynaud's & MCTD - Dame Carol Black & Prof. Chris Denton

Systemic Sclerosis - Prof. Chris Denton  


What were your presenting symptoms?   

Circulation cut off / blue fingers

Constipation, GERD

Uulcerating fingers

Swollen hands

Thickening & hardening of the skin over the body


How long did it take for you to be diagnosed after first symptoms?

A Week? It was a long time ago! 
  

Current reality:  

Slow recovery from Systemic Sclerosis as a result of stem cell transplant.

Still have antibodies for both MCTD and Systemic Sclerosis in my blood. 

Still have severe Raynaud's.

Still have GERD.
  

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

I still have thickened skin on my face.
With the exception of my hands, the rest of the skin on my body is becoming looser.

I have one finger ulcer which has been troubling for two years. No new finger ulcers though.

Hands have deteriorated since the transplant, with more thickened skin, stiff joints and curled fingers.

Management: Lots of moisturiser, hand exercises (massage, manipulation, putty etc).   

Raynaud's managed by keeping warm. 

 
Medication:

Omeprasol, MMF, Bosentan, Fluoxetine, Hydroxychloroquine, Clarithromycin, Ranitidine, Montelukast, Prednisolone, Calcite, Vitamins various.
   

What are your 3 biggest current challenges due to your diagnosis?
 
Inability to make my hands work due to tightened skin, shortened tendons / curled fingers and my digital ulcer.

Inability to put gloves on due to misshapen hands. 

Inability to go outside for long due to Raynaud's.   


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

Keep warm! 

Keep exercising and stretching your hands.

Be careful of what you eat - nothing too acidic that will promote GERD. 
   

What are your 3 wishes for the future?

One wish only: to have my hands back!




To read Prof Chris Denton’s presentation at the annual Scleroderma Family Day 2017, ‘Having a stem cell transplant: Patient and Doctor Perspective’, featuring Sarah, Click here  

To read about Sarah's friends, Sue and Adrian's fundraising for the Scleroderma Unit at The Royal Free hospital, Click here
Big Thanks go to Sarah for sharing her scleroderma and Raynaud's experience.    

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      



RARE DISEASE DAY:
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. 

VIDEO


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

Links

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
#Raynauds
#RareDisease  

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.
#HOPE 


 

Last Update: April 2018




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