Tuesday, 18 July 2017

Flashback Scleroderma Awareness, Raynaud's, Rare Disease Month 2017


Flashback Scleroderma Awareness 2017

Last month, June, was Scleroderma Awareness month, with 29th June being WorldScleroderma Day

And, WOW, what a busy month it was, for raising awareness of our multi complex, rare disease. 

In this article I discuss the importance of raising awareness, along with the results of my patient profile global campaign and medical research.
  

Why raise awareness?  

This is our opportunity to spotlight the entire scleroderma and Raynaud’s experience in all of its forms. Whether that be from the symptoms experienced, to their management, as well as, the day to day reality, resulting from the disease process.  

Having a rare disease forces you to become your own advocate

As well as, it forces you to become your own medical expert in your diagnosis, along with, its optimum treatment and best management. Expert specialist centres are crucial to implement this. 

For 2017, I focussed my awareness month campaign on patient profiles and research across the globe. 


This highlighted the 3 common hallmarks for best practice, regardless of location. 

Namely: 

Early diagnosis 

Expert Specialist Centres 

Access to innovative medicines  


At the end of Week 3 I discussed the current medical research landscape in relation to making progress to discovering the cause and cure of scleroderma and Raynaud’s. 

The global patient profiles highlighted several current unmet clinical needs, showing that, although no two patients display the exact same set of symptoms, some similarities can be made.  

I will be discussing these clinical unmet needs in more detail, in future articles.  

My fingers and eyes are still protesting at the increase in computer / keyboard use over the course of the month, with several new lumps of calcium appearing at the tips, due to excessive use. Living the dream indeed!  




Global interactions 

Again, our friends over in Canada showed the rest of the world how to raise awareness of scleroderma. Huge thanks to them, for all that they do, and continue to do. The Niagara Falls in teal

On 29th June, World Scleroderma Day, I was delighted to receive via the post, my ‘Me&Sclero’ goody bag – a total surprise and perfect timing! A lovely bag, information leaflet, T-shirt and business card. 




Huge thanks to Sarah, DAY 27 for her generosity.   






I am very excited about Sarah’s scleroderma project, and I wish her all the success in the world, with raising awareness of our disease. Please support her fundraising efforts. 

USA based SclerodermaResearch Foundation made a video outlining the progress which has been made so far, over the last 30 years. As well as, they raised an amazing 1.4 million at the Cool Comedy Hot Cuisine event held in LA on 16th June.  

  
So the rest of the year? 

Huge thanks to USA patient Sharon Esposito for sharing her wonderful images for Scleroderma Awareness month. more

As we know all too well, sadly, our true reality is that we live with this diagnosis 365 days of the year. 

My 2016 Scleroderma Awareness Month campaign focussed in more detail on the symptoms and body parts affected, with a flashback to 2016 awareness global efforts.  




Our reality as a patient: 

Each day brings along a variety of different symptoms which have to be respected and prioritised, in the hope to have the best day possible, given the diagnostic reality. 

On some days, this means spending the day in bed

All of the patient profiles showed, fatigue and tiredness, as constant companions.


Medical Research Progress: 

5th World Congress in Systemic Sclerosis, Bordeaux, France  





The5th Systemic Sclerosis World Congress is due to take place Feb 15 – 17  2018 in Bordeaux, France next year. 

This bi-annual event is the hub of the most up to date advancements in research, and current understanding of the entire scleroderma disease process.  


Summary:  

Overall, an improvement in the medical understanding as to the nature of the disease and its implications, has improved immensely, over the course of the last decade.  

However, due to the multi complex body systems involved in the scleroderma, autoimmune disease process, research still falls way behind with providing an understanding as to the cause, and effective treatments, leading to a cure.  


 

Thank You to everyone who took part in the patient profile campaign, as well as, Thank You to everyone for your support and encouragement throughout the campaign, sharing the same dream – a Scleroderma Free World.  




DAY1 – DAY 24, INDEX Scleroderma Awareness Campaign Patient Profiles 2017  
     
DAY 25 – DAY 30, INDEX 2 Scleroderma Awareness Campaign Patient Profiles 2017

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


July 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  

An edited version of this article was published here in my Column with Scleroderma News. 




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 2016, Click here

World Scleroderma Day 29th June 2017, 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   

Living the dream, hoping for a cure 
 #SclerodermaFreeWorld #RaynaudsFreeWorld
#RareDisease #Hope #Belief 

Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates   https://www.facebook.com/RaynaudsSclerodermaGlobal/   


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

Please use the icons below to share this article #SclerodermaAwareness

#SclerodermaFreeWorld #RaynaudsFreeWorld
#RareDisease #Hope #Belief



1 comment:

  1. Scleroderma is autoimmune disease in which your own immune system targets the connective tissues of the body. There's little scientific evidence to support the use of alternative medicine in treatment of scleroderma. Herbal Remedies of Scleroderma may be useful for individuals looking to manage this condition.

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