Monday, 26 June 2017

Alexandra Marler, UK. June Scleroderma Awareness Month 2017. Raynaud's, Autoimmune Rare Disease. Patient Profiles DAY 26

 
Alexandra Marler, UK

Patient Profiles DAY 26

June Scleroderma Awareness Month 2017

Raynaud's, Autoimmune Rare Disease

Alexandra Marler, UK


Name:           Alexandra Marler   

Location:       Haslemere, Surrey UK     


Diagnosis:      

Systemic Sclerosis  

Pulmonary Fibrosis 

Raynaud’s

Polymyositis 

Rheumatoid Arthritis   


Year of diagnosis:    Polymyositis 1989, Scleroderma etc 2000     


Age at diagnosis:     22 years old, for Polymyositis and early 30s for Scleroderma   


Where / who diagnosed you?:          

Professor Black at the Royal Free Hospital, London  



What were your presenting symptoms?:     

Breathlessness, cough 

Tight skin, red rash  

Reflux and difficulty swallowing   

Chronic Raynaud’s  
 

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

I was having Scleroderma symptoms in 1990 so nearly ten years.


Current reality: 

I am not working, and my life is spent managing this disease and trying to minimise its progression. I do manage still to have a social life, though it is reduced.


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

I currently take:   

Mycophenolate Mofetil  

Rituximab infusions  

Prednisilone   

Esomeprazole   

Citalopram   

Sildenafil   

Pain relief meds   

Supplementary Oxygen at 2 litres on exertion     

Fibrosis to Alex's left lung

metal pins in Alex's left wrist

Metal pins in Alex's back



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


My biggest challenge is my lung disease and getting out of breath and tired  


Followed by my joint disease, with pain and inflammation  


In fact, general pain and exhaustion is a factor that covers everything  

Raynaud's

foot ulcer


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

Self Care – having massages, meditating, healing, spending time moisturising my skin and hands, AND, doing things which make me happy

Saying No to things and people in order to stay rested

Informing friends and family, where possible, of what living with this disease means    


What are your 3 wishes for the future?

Earlier diagnosis for people

A cure

For me, some way to get more out of life whilst coping with this disease   


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

Alex was recently featured in a BoehringerIngelheim video to raise scleroderma awareness, Click here  

I was honoured to have been a fellow prize winner with Alex, in 2015.   

Alex won The Raynaud’s Scleroderma Association and The Scleroderma Society’s art competition, with her image being used as the front cover for the patient magazine.  

I was honoured to be the first and last recipient of ‘Volunteer of the Year’.  

Here we are living the dream, together, and thanks to the very brave UK patient Hollie Owen for sharing her photographer skills:   

Alex and me, June 2015

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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