Friday, 30 June 2017

Anne Mawdsley, UK. Scleroderma Awareness Month 2017. Raynaud's, Autoimmune Rare Disease. Patient Profiles DAY 30

Anne Mawdsley, UK

Patient Profiles DAY 30

June Scleroderma Awareness Month 2017

Raynaud's, Autoimmune Rare Disease 


Anne Mawdsley, UK


I have chosen to make Anne the focus of the final day of my Scleroderma Awareness 2017 Patient Profiles Campaign.  

Without a shadow of a doubt, the entire global scleroderma and Raynaud’s community are eternally indebted to Anne for her tireless fundraising and relentless awareness raising, having set up the Raynauds & Scleroderma Association in 1982.  

Like most scleroderma and Raynaud’s patients, Anne was a character who you would never forget, after first meeting.   

Her zest for life and ‘can do’ attitude, regardless of living with a body which had been consumed with the diagnosis for decades, was frankly, extraordinarily superhuman. 
 
I accept that there are no two scleroderma and Raynaud’s patients who present with the exact same set of symptoms, and so, direct individual patient comparisons can not be used as an accurate, scientific measure of outcome prediction or individual symptom severity. 
 
But, by being an example of how to live with this diagnosis with respect for the symptoms, Anne showed that it can be done. 

This has given me tremendous strength in persevering through some of my more challenging days - 365 days of the year, over the last, what will soon be, 20 years! 

And, encouragingly, the ‘long term’ patients included within my Scleroderma Awareness Month 2017 Patient Profile Campaign, also show that it is possible for the disease to become latent, manageable, and, in my personal experience, reversed. 

For, 19 years post diagnosis, on 30th November 2016, Prof Chris Denton confirmed that ‘my skin has now cured from scleroderma’.  

However, I was lucky – I had an early-ish, early diagnosis, where treatments to suppress the symptoms (not a cure), still remained a viable option to me, even though my name was included on the stem cell transplant list, during this time.  

Consequently, through early-ish intervention, I have minimal internal organ damage other than severe GERD and MSK joint pain as my most severe symptoms, making for my full time job.

From first being diagnosed, initial diagnosis, back in Autumn 1997, Anne was of huge support to my family and I.  

Although, for my first decade of living with the diagnosis, my family had more contact with Anne and the RSA than I, as I was still not ready to talk so ‘matter of factly’ about the diagnosis, and how it had turned my world upside down and shattered my dreams.  

Anne created and set up the RSA in 1982, which included an annual conference aimed at patients and families alike. I know that my family benefited greatly from the information provided at this forum, as well as, were helped with their understanding, by meeting others in the same ‘scleroderma boat’.  
  

Over the years, I watched Anne, each year, challenge herself and her body, with the most ‘crazy’ fundraising events, which she subjected her body to.  

One such event was a sleigh ride with huskies in Finland, which the scleroderma medical genius trailblazer, Prof Chris Denton, had strongly advised against!  

Another event, and, sadly, the last time where I saw Anne, was her pedalo challenge down Lake Windermere, June 11th 2012, with an actor from the BBC1 drama ‘Eastenders’.  

Although it was an early summer’s day, the temperature thought otherwise, and by the finish line, Anne was shivering with cold. But, hats off to Anne, she DID it, with her devoting and loyal husband, Harry, supporting her throughout. 

I often joked with Anne that ‘I needed a Harry’ as their unconditional love for each other was so heart warming and endearing.  

The photo below shows Anne at the finish line. I am on the right of the photo, holding my white dog, Mitzy, as the swans were tying to attack her!  

Anne completing her pedalo challenge 11.6.12

It was a great day, to be able to share 'the moment' with Anne, and, in one of my favourite places in the world, even though the temperature was rather refreshing for a Raynaud's and scleroderma patient! 

I also had the opportunity to meet the lovely fellow patients Bev Myers and Hannah Gray. Anne was great at bringing everyone together, united by our rare diagnosis.

I have written about ‘Living the dream being your own Raynaud’s and Scleroderma advocate’ here, a role which I am truly humbled by.   
 
I owe huge thanks to Anne for developing me into such a scleroderma and Raynaud’s parrot without me realising, at the time! 

Anne was good like that – she told me that she had even got Prince Charles to agree to sign her book when he planted a tree in celebration of the RSA 20th anniversary at Highgrove. 

As I highlighted at the start of this piece, if you had met Anne, you would never have forgotten her.  

Last year, driven by Anne’s work, I set up this blog space as well as a Facebook page and a google plus community, with all donations going direct to fund medical research at the Scleroderma Unit, The Royal Free Hospital, led by Prof Chris Denton. 
 
It is with deep sadness that I am writing this profile, however, I know that Anne is in a pain free, scleroderma and Raynaud’s free, place now. 

I am truly grateful for her friendship and all that she did to pave the way to improve the landscape for patients in so many aspects.  

This was highlighted and recognised within the P152 Poster ‘Optimizing Scleroderma Centers of Excellence: Perspectives from Patients and Systemic Sclerosis (SSc) Experts’ presented at the 4th Systemic Sclerosis World Congress held in Lisbon last year.

With an acknowledgement 'dedicated to the memory of Anne, founder of the Raynauds and Scleroderma Association UK, who raised over 10 million pounds for SSc research, education and advocacy in her lifetime.'   

P152 Poster is included within Volume 1 Number 1 of the Journal of Scleroderma and Related Disorders, and can be downloaded to view, here  

To read more about Anne, Click here  

 
RIP Anne Mawdsley 

31 May 1942 - 12 October 2014  

 
Forever within our hearts, and whose legacy will live on. 
 

It is with huge thanks, I owe to ALL of the patients who took part in the Scleroderma Awareness Month 2017 Patient Profiles Campaign - Research.  

Every patient’s story brought tears rolling down my face, as I put the campaign together. 

Which, had not been envisaged by me, whilst the idea of the campaign was in its infancy. My Sjogren’s overlap symptoms were on strike for a few/most days during June Scleroderma Awareness Month!  

Living with this diagnosis makes you dig deep into finding out who you really are, and what / who, is truly really important to you. As Bob Marley sang, ‘You never know how strong you are, until you have to be’.  
 
I hope that this Campaign has been of interest, not just from an educational perspective but also, from a supportive element to fellow patients. 

The Campaign has highlighted the universal hallmarks for best patient management, treatment and care. 

Namely: 

Early Diagnosis  

Expert Specialist Centres  

Access to Innovative Medicines   


As well as, the Campaign has highlighted universal global patient unmet clinical needs. 

Namely:  

Raynaud’s / Digital Ulcers   

GERD involvement  

Calcinosis  

Fatigue / Pain  

CAUSE and CURE to be understood #SclerodermaFreeWorld    



THANK YOU AGAIN TO EVERYONE WHO TOOK PART AND TO EVERYONE WHO SHOWED THEIR SUPPORT #SclerodermaFreeWorld  #RaynaudsFreeWorld 


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. 


  

Scleroderma Family Day 2020

25th Anniversary Meeting

The Atrium, Royal Free Hospital, London, NW3 2QG

Chair: Professor Chris Denton

PROVISIONAL PROGRAMME


09.30 – 10.00           Registration and Coffee

10.00 – 10.20           Welcome                                                   Dame Carol Black
                                                                Prof Chris Denton & David Abraham

10.20 – 10.40           What is a Biopsy?                                    Dr Kristina Clark

10.40 – 11.05           Dental aspects of Scleroderma            Prof Stephen Porter

11.05 – 11.25           Gastrointestinal problems –                       Dr Fiza Ahmed
shedding new light on old problems 

11.25 – 11.50           Pulmonary hypertension and the heart Dr Gerry Coghlan

11.50 – 12.15           Scleroderma cohort studies –                  Dr Francesco 
                                 ‘Learning from our patients’                     del Galdo

12.15 – 14.15           LUNCH BREAK – see below  

14.15 – 14.45           25 years of progress –                          Prof Chris Denton
from ‘black box’ to ‘positive trials’

14.45 – 15.15           International speaker –                            Dr Madelon Vonk
                                 Scleroderma Management in Netherlands

15.30                        Raffle


Lunchtime Discussions Groups / Demonstrations include:

Clinical Trials                                                                  Rachel Ochiel and team
National Institute of Health Research                            Christine Menzies
Drug Information / monitoring                                        Pharmacy
Massage                                                                         Keith Hunt MBE
Pulmonary Hypertension Education / nursing            Sally Reddecliffe/Adele Dawson
Rheumatology Laboratory                                          Research Laboratory Staff
Scleroderma Education / Nursing                          Louise Parker/ Joseph Cainap
Thermography                                                                Dr Kevin Howell
SRUK                                                                             Ollie Scott
Sjogren’s syndrome                                                       British Sjogren’s Society 


To Read My Articles:  

Gift in My Will, Click here 

Planning for the Future, Click here  

 


Rare Disease Day:   

Rare Disease Day 2020:  

  

Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here  


 

Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt  here   


 
Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click here  

  


 
Rare Disease Day 2019: Leaving a Legacy Gift, Click here       



Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here  

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2017 Rare Disease Day Medical Research  


2016 Rare Disease Day Patient Voice   

2016 Rare Disease UK Parliamentary Reception       

  

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.


To read about medical research at the scleroderma unit, Click here   

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 overall. 

For optimum patient care, 3 hallmarks preside:







supported by a medicaldream team’ 
(expert specialist as the clinical lead).

INVESTMENT in MEDICAL RESEARCH is CRUCIAL.   


To read my articles:  

Celebrating 20 years of being a patient at the Scleroderma Unit, Click here

2019 New Challenges, Click here
 
NIHR Video: 'My Experience of Clinical Trials', Click here 

If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here   

The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here  

2018 Scleroderma Awareness Raising and Medical Research, Click here    


SCLERODERMA:

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- How to Diagnose, Click here        

'All you need to know', 2016 Awareness Video, Click here    

Global Patient Profiles 2018 Video, Click here    


Unmet Medical Needs, Click here     




Calcinosis Video, Click here    


The scleroderma tooth fairy, Click here     


Skin Cancer and scleroderma, Click here   

 

Sept 2017

Prof Chris Denton and I, Sept 2017

June 2019



This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.  

Read more, here.    

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. Along with the Raynaud's world trail blazer, Dr Kevin Howell.  

I am truly humbled and inspired by their work ethic and commitment to their patients.  

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 original diagnosing doctor, that I was looking at a 15month prognosis. 
 


  

Chat Magazine May 2019

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    


  

World Scleroderma Day 2018, 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, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 

Raynaud's

October:  
Raynaud's, Click here  
 
To view the UK treatment guidelines for Raynaud’s Phenomenon, Click here   

To view the EULAR treatment guidelines, Click here   

To view Thermograph Video, Click here    

To view Thermograph image, Click here    

   
My Raynaud’s reality, Click here     


The global Raynaud's trailblazer - Dr Howell and I, Sept 2017

To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here   

Invisible Disability Awareness Video, Click here

To read My ‘Invisible Disability’ experience, Click here   

50 Shades of Blue, Click here



 

For latest updates follow / subscribe:  

@SclerodermaRF 

@RaynaudsRf 

Twitter, Instagram, Blogger, YouTube, Facebook Page:

#SclerodermaFreeWorld           #RaynaudsFreeWorld    #Research  



Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.  


Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here    
 


100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You. 

  

  
Last Update: Feb 2020.       



Anne Mawdsley, UK

Patient Profiles DAY 30

June Scleroderma Awareness Month 2017 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld 

 blog.raynaudsscleroderma.co.uk  









No comments:

Post a comment