Friday, 30 June 2017

Anne Mawdsley, UK, June Scleroderma Awareness Month, Raynaud's, RareDisease, 2017 Patient Profiles DAY 30


RIP Anne Mawdsley, 31 May 1942 - 12 October 2014 


Anne Mawdsley, UK  


June Scleroderma Awareness Month 2017 Patient Profiles – DAY 30 


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; died 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    


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       

Week 1 Scleroderma Awareness Month, Raynaud's, Rare Disease, 2017 – Patient Profiles Campaign, Click here

Week 2 Scleroderma Awareness Month, Raynaud's, Rare Disease, Patient Profiles 2017, Progress in medical research, Click here  

Week 3, Medical research areas of current interest, Scleroderma Awareness Month, Raynaud's, Rare Disease 2017, Patient Profiles Campaign, Click here

DAY1 – DAY 24, INDEX Scleroderma Awareness Campaign Patient Profiles 2017, 
Click here

DAY 25 – DAY 30, INDEX 2, Scleroderma Awareness Campaign Patient Profiles 2017, 
Click here   


INDEX to Scleroderma Awareness 2016 Campaign, Click here   

To read my articles:  

Importance of an early diagnosis, Click here 

Taking Part in Clinical Research Trials, Click here

Expert Specialist Centres, Click here 

My Skin is Cured from Scleroderma, Click here 

UK Guidelines for Managing and Treating Scleroderma, Click here  


World Scleroderma Day 29th June Click here   

 
Please donate to help fund medical research at The Scleroderma Unit where 100% of all of your monies will be used for medical research purposes only. Thank You.
DONATE     

June 2017 Total

Living the dream hoping for a cure

#SclerodermaFreeWorld #RaynaudsFreeWorld 

#RareDisease #Hope #Belief 

Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates   


Thanks to USA patient Sharon Esposito for sharing her wonderful creativity

Thanks to USA patient Sharon Esposito for sharing her wonderful creativity


Please use the icons below to share this article #SclerodermaAwareness  

#SclerodermaFreeWorld #RaynaudsFreeWorld 

#RareDisease #Hope #Belief

Journal of Scleroderma and Related Disorders (JSRD) – Abstracts Volume 1, Scleroderma Awareness Month, Raynaud’s, Rare Disease, 2017, Patient Profiles, Click here   

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



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