Monday, 4 June 2018

Sarah Lloyd, UK. June Scleroderma Awareness Month 2018. Raynaud’s, Autoimmune Rare Disease.

 Sarah Lloyd, UK.
June Scleroderma Awareness Month 2018.
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.

Ulcerating 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!





June 2017.


2018 UPDATE

I am nearly two years post Stem Cell Transplant for Diffuse Systemic Sclerosis.

My treatment has definitely stopped the progression of the disease.

I could not walk more than 20m pre-transplant and my skin score was 42/51.

Now my skin score is around 8.

My digestion is much improved and my overall ability to do things is better.  

I still have thick skin in my face.

The biggest thing though, I am afraid, is that my hand function is a lot worse.

Although my skin has loosened up to my wrists, it is still very tight and constrictive in my hands, and my finger contractures have increased a lot - despite exercising and massaging every day.  

I use only my thumbs and index fingers to make things happen. 


CURRENT SYMPTOMS   

Scleroderma - Finger contractures.

Thickness of skin in hands and face.

Raynaud’s.

GERD.


Current Medications:

Omeprazole, MMF, Prednisolone, Bosentan, Clarithromycin, Hydroxychloroquine Sulphate, Calcichew, Fluoxetine, Montelukast, Ranitidine


RESEARCH 2018 

Have you taken part in a research trial? 

Yes


How many trials? 

Several - I am afraid I can’t remember.

My first one was Prof Denton’s Heparin trial abut 25 years ago!

I am currently taking part in an online SPIN trial.


Did you have to travel far?

From Dorset to the Royal Free is 2.5-3 hours.


Would you advise others to take part in research trials?

Definitely yes.

The more research that can be done to find a cure for this disease, the better.

The trials can provide benefits for many, not just few. 



IN BETWEEN MEDICAL APPOINTMENTS:

Since transplant, my medical appointments were every three months (Haematology & Rheumatology) and are now going down to six, which is good.

The contractures on my hands have, unfortunately, got worse. So I exercise them a lot, using putty and stress balls to try and stretch them out.

My husband massages and manipulates them for two hours a day, without fail, just to try and get them to be more flexible.

The fact that my hands seize up so easily means I am still limited in what I can do. I can drive, but not too far. I can lift light things for cooking (one plate at a time etc) and I can do laundry. Ironing is a no-go (neither is knitting!).

The warm weather naturally makes them more flexible but the cooler weather is a nightmare; they just seize up, which is frustrating for doing any kind of admin or for going out. 

I can walk and I do as much walking as I can, as long as I am wrapped up warm.

In the meantime, I look after the household and am doing what I can for my daughter in terms of preparing for university / conservatoire in Sept 2019.

Big Thanks go to Sarah, for sharing her scleroderma and Raynaud's experience for Scleroderma Awareness Month. And, huge thanks for the use of Sarah's hand image to highlight the 'Sclerodactyl, Clinical Unmet Need'.  


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





Current Unmet Clinical Needs 2018: 

CALCINOSIS, Click here  

GUM RECESSION, TOOTH EXTRACTS, Click here 

SOFT TISSUE, ULCERS, Click here  

TELANGIECTASIA, Click here 

SCLERODACTYL HANDS, Click here   

INVISIBLE DISABILITY, Click here 

RAYNAUD'S, Click here 

GASTROINTESTINAL, Click here



Prof Chris Denton presenting a plaque to Kevin's daughter, Michelle, and wife, Debby, for funds raised in Kevin's memory for medical research at the Unit. Thanks to Michelle for the photo.
  
'Scleroderma Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click here  
Global Patient Profiles Campaign Index, Click here
Importance of Medical Research and Awareness Raising, Click here
NIHR Video: 'My Experience of Clinical Trials', Click here 
Week 3, 2017 Patient Profiles: Medical areas of current interest, Click here
Week 2, 2017 Patient Profiles: Progress in Medical Research, Click here 
Week 1, 2017 Patient Profiles: Introduction to multi complex disease, Click here
Why I chose global Patient Profiles for my 2017 / 2018 Campaign, Click here 
 
2017 Global Patient Profiles Campaign Introduction, Click here 
 
'Being your own awareness advocate', Click here
 
Scleroderma Awareness Month Flashback 2017, Click here 
Scleroderma Awareness Month Flashback 2016, Click here 
My 2016 Campaign, A to Z: Scleroderma and Raynaud's diagnosis, Click here 
 
2016 Campaign Video, Click here 
March 2018 Autoimmune Disease Awareness Month, Click here 
World Scleroderma Day 2017, 29th June, Click here 
World Scleroderma Day 2016, 29th June. Origins of the date, Click here 
World Scleroderma Day 2015, 29th June. 

James Carver, myself, Prof Chris Denton

I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.  

I am immensely grateful to James Carver MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 


To view my article 'Why Global Collaboration is Important', Click here

All patients included within the global patient profiles campaign, highlight the URGENT need for an investment in medical research, as well as: 


Early Diagnosis 
Expert Specialist Centres 

Access to innovative medicines 

ALL being, crucial factors for best practice management and care.  

To read my articles:
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   
This year, I am celebrating 20 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. 
Sept 2017

Prof Chris Denton and I, 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. Read more, here
For latest updates follow: 
Facebook Page:
Twitter: @SclerodermaRF  @RaynaudsRf  
#SclerodermaFreeWorld           #RaynaudsFreeWorld
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: June 2018

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