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. 

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  

Thursday, 29 June 2017

Wyatt the Warrior, USA. WORLD SCLERODERMA DAY. June 29th Scleroderma Awareness Month 2017. Raynaud's, Autoimmune Rare Disease. Patient Profiles DAY 29



 Wyatt the Warrior, USA


WORLD SCLERODERMA DAY

29th June

Patient Profiles DAY 29

June Scleroderma Awareness Month 2017 

Raynaud's, Autoimmune Rare Disease

Wyatt The Warrior, USA



TODAY is World Scleroderma Day.  

Today’s patient profile focusses on a most brave and inspirational scleroderma patient, Wyatt The Warrior - WYATT WRIGHT.  

Wyatt’s attitude and how he manages his diagnosis is truly remarkable.  

Wyatt's picture explaining Scleroderma

Wyatt with his twin brother Weston, and their friends, Living the dream

As is Candace, his mom, truly remarkable with her relentless efforts to ensure Wyatt has the best medical care, as well as, her tireless efforts with scleroderma awareness raising and fundraising.  



Name:           Wyatt the Warrior, as told by his superhuman mom, Candace   


Location:       We live in Derby Kansas


Diagnosis:     


Limited Scleroderma, Raynaud’s
 
Mixed Connective Tissue Disease 


Year of diagnosis:    2014, 2017  


Age at diagnosis:     8   


Where / who diagnosed you?   

Dr Goodwin in Kansas City at children's mercy diagnosed him. 

Now our Dr is Dr Cooper in Kansas City at Children's Mercy.  


What were the presenting symptoms?  

I had noticed what looked like dirt on his ankle and accused him of not showering properly. I later took an alcohol prep pad to wipe it, and it didn't come off.

The more I looked at the leg I noticed ‘the dirt’ travelled up his leg.

It had already crossed 3 joints, the ankle, knee and hip, all on the right side.

It was spreading to his chest and on to the right elbow as well.

After several trips to the doctors office and firing one doctor, we had a positive RNA test. That rheumatologist knew right away, what it was. 

Wyatt was started on Methotrexate and was told he would take daily injections for 4-6 years.   

Current reality 

Since his diagnosis, Wyatt has had several other things come out of the wood work.

He now has frequent migraines, and is a on a daily medication for them, plus takes Vit B2 to help. He has tried several other vitamins and meds but they have not worked very well.

Wyatt has what the medics call ‘a cocktail’ - which is 3 meds he takes all together, as a rescue, for when they get really bad.

Wyatt has had severe problems with his GI tract. He feels nauseated most of the time, which I can't even start to know how it feels, when you want to throw up all the time. 

It has to be miserable. He is on 2 daily medications to help with this, along with his appetite. 

Zofran is his best friend all the time, we never leave home without it.

Wyatt now has a tic disorder, they seemed to keep getting worse so we went to another neurologist, who prescribed daily tablets.

Wyatt also takes folic acid because the mouth sores get too bad without it.

Just in the last few months we had a positive RNP antibody test, this leans us towards a Mixed Connective Tissue disease.  

He is still on the same meds but we are having a hard time with his weekly shots, we have started weekly IV fluids to try and help this matter out. We are getting a second opinion on the GI Issues.


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

Challenges consist of not being able to be a a normal kid all the time. 

He has several visit to hospital and missed out on baseball games.  

Skin tightness in his leg has slowed him down and caused his legs to hurt.


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

Make sure you get second opinions when you are unsure of what your doctor’s treatment, or if they are unsure. 

Find a support group. 

Stay educated

 
What are your 3 wishes for the future?   

More funding for research, a cure, and that our scleroderma family have a good support system.  


Earlier this year, Candace and Wyatt organised a Scleroderma awareness Billboard, near to where they live. 

To read more about this, Click here   



To read about Wyatt taking part in Models for Miracles” in Wichita, Kansas, April 2nd 2016, Click here

Candace and Wyatt are currently fundraising for Angela Fernandez, an 8 year old systemic sclerosis princess who desperately needs funding for her and her Mom, Cuella Martha, to attend the forthcoming National Scleroderma Conference in Chandler Arizona.  

Please help Angela and her Mom go to the forthcoming Scleroderma Conference

To Donate, Please Click here  

For details of the Conference, Click here

To view Wyatt the Warrior Facebook Page, and fundraising items, Click here    






#SclerodermaFreeWorld #RaynaudsFreeWorld    


Wyatt with his Mom, and family



To read my article for World Scleroderma Day 2017, Click here   


Huge thanks go to Candace for sharing Wyatt’s scleroderma reality and experience in such detail, for scleroderma awareness month. 
  
Infinite gratitude goes to Candace for all that she does throughout the year for raising awareness of scleroderma and helping other patients, especially other families sharing the same heartbreak of seeing their child go through this diagnostic reality.     

It is with pure intention that I made Wyatt the focus of today’s patient profile, 29th June World Scleroderma Day.   

I have a photo of Wyatt on my desk, and on my more challenging days, seeing him, and knowing a snippet of what he goes through, keeps me on track with my efforts to help with the dream of a SclerodermaFreeWorld, becoming a reality.  

It is my ultimate dream that the cause and cure to scleroderma will have been discovered before Wyatt’s 21st birthday, and even better, if this scientific mission is completed before then! #Belief #Hope   

Please DONATE to help 8 year old, systemic sclerosis patient, Angela attend the forthcoming conference in Arizona, with her Mom.

 

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