Tuesday, 2 May 2017

June Scleroderma Awareness Month - Flashback 2016

Well, unless you had a month away from your internet connection, you will know that June was Scleroderma Awareness month, with World Scleroderma Day, highlighting at the end of the month on the 29th.

However, as we scleroderma patients know only too well, we live with scleroderma for the remaining 364 days of the year, and this reality is not something which we can switch off at 5pm, until the next working day. We are living and breathing this as our reality, 24hours a day, 7 days a week, andso, (for me at least, and I am sure that I can speak for every scleroderma patient on this), there is a huge urgency for an improvement in the current scleroderma patient landscape. The awareness month and featured World Scleroderma Day can be optimised as a springboard in helping with this. 

At Scleroderma News, daily information posts about scleroderma and all that it entails were published, throughout June. Thank You for the huge response to these posts and I am delighted that they were of interest. My intention was to focus on the many current unmet needs of the scleroderma patient, in the hope for improved understanding and treatments to be made available.

Here is the index to the subjects of each daily post:

DAY              TITLE
1                                     Organogram different types
2                                     Symptoms / areas affected
3                                     All body parts
4                                     Symptoms
5                                     Diagnostic tests
6                                     EULAR classification
7                                     Raynuad’s
8                                     Management of Raynaud’s
9                                     NHS DU Policy
10                                 Skin involvement
11                                 Gastro-intestinal
12                                 Nicola Whitehill Birthday
13                                 Factor XIII
14                                 Fatigue
15                                 Kidney involvement
16                                 Heart
17                                 Lungs
18                                 Skin
19                                 Calcinosis
20                                 Bone, joints, muscles
21                                 Gastro-intestinal upper
22                                 Journal of Scleroderma and Related Disorders (JSRD)
23                                 Kidney
24                                 Digital Ischaemia management
25                                 Pain, hair loss
26                                 Gastro-intestinal lower
27                                 Skin, Telangiectasia
28                                 Other symptoms (cellulitis, vitiligo)
29                                 World Scleroderma Day
30                                 Patient healthcare dream team

To view any of these daily posts click here

Here are a few highlights from June Scleroderma Awareness month 2016 and World Scleroderma Day 2016:

This year saw scleroderma patients along with their families and friends participate in various walks across the United States organised by the Scleroderma Foundation. For more information about this click here 

The Scleroderma Research Foundation (SRF) flooded social media with their hardword.org campaign. To read more about this click  here  

On the 7th June, The SRF also held their signature Cool Comedy Hot cuisine night with Bob Saget, in San Francisco at the Fairmont Hotel and raised an awesome $600,000 for research. 

Actelion, the pharmaceutical company, put together a very informative clip focussing on the true reality of the day to day living of two different scleroderma patients. Click  here  

FESCA also put together a you tube clip about a fairy princess in line with their ‘hand in hand for a better future’ campaign. Click  here 

The pharmaceutical company Boehringer-Ingelheim also put together a clip which focussed on the patient, Ilaria. Click here

However, in my view, the accolade for showing the rest of the world as to how to raise awareness of scleroderma, has to go to the combined efforts of the Scleroderma Society of Canada and the Scleroderma Society of Ontario, for not only organising for the CN Tower to be lit up in blue, but for the awesome effort of organising for the Niagra Falls to be lit up in blue on World Scleroderma Day. To see the video of this click  here 

And furthermore, on behalf of those living with scleroderma and pulmonary arterial hypertension, Ontario MPP Michael Harris delivered 833 postcards to the Hon. Eric Hoskins, Minister of Health and Long-Term Care, requesting he puts words into action and ensure all PAH patients have immediate, publicly funded access to all Health Canada approved PAH medications. 

A Walk was also held on June 25th at Budapest Park, Toronto, along with other runs, making a combined total of $356, 479 raised.

ABRAPES, The Brazilian Scleroderma Society held several events, one of which was an education day at the hospital in Rio, which involved patients and medics alike. Scleroderma Singapore, Scleroderma Switzerland, Scleroderma Australia, Scleroderma Italy and Scleroderma India held similar events also. Scleroderma Netherlands held a visual art exhibition at the European Parliament.

On a personal level, I had an extremely busy month which resulted in very sore fingers by the end of it all! By the first day, I was delighted to be featured in my local media online and in print, as well as The Daily Mail online, which prompted a global response, including the China Times, and Turkey Times! 

Here are some of the links:

I was, and remain so, absolutely over the moon, to have smashed my personal scleroderma awareness month fundraising target goal of £500 for Professor Denton’s medical research at the scleroderma unit at The Royal Free Hospital, with the current total of £647.76.

On the 29th June, in honour of World Scleroderma Day, I launched the new google plus community for Raynaud’s Scleroderma Awareness Global Patients. The purpose of this community is to bring together a global space for sharing of best practice for scleroderma and raynauds patients, using google translate for non English speaking patients. Please register as a member (it is free), and contribute / share anything which you think is of interest. The daily awareness posts published here on Scleroderma News can also be found under their relevant subject headings, on the community page, which is linked and twinned to my blog here at Scleroderma News.

Although my fingers and eyes have been on strike for the first week of July, after overuse for scleroderma awareness month, I really think that this year had the most momentum and coverage for awareness, so far. The plans for next year have already begun!
It was a great opportunity to meet so many different scleroderma patients from around the world, who share the same dream as me – a scleroderma free world, and united globally, this will become a reality, and in my lifetime….. I hope.

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

To read my recent article '29thJune World Scleroderma Day’ Click here  
Scleroderma Awareness 2016 Campaign Index Click here  

To read my recent article about ‘Why Global Collaboration is so Important to the Raynaud’s Scleroderma patient’ Click here 

For further 'engaging your community for fundraising' ideas from findacure Click here 

To read my articles:
The importance of an early diagnosis click here 
the role of medical research click here
the importance of expert specialist centres click here
diet and nutrition click here
taking part in research trials click here
the UK guidelines for management and treatment of Scleroderma click here
my skin is cured from scleroderma click here 
living the dream as your own Raynaud’s Scleroderma Rare Disease patient advocate,
click here

Please DONATE to help fund medical research at the Scleroderma Unit at The Royal Free hospital where 100% of your donation will be used to fund vital medical research. Thank You.
Living the dream, scleroderma style, hoping for a cure

#SclerodermaFreeWorld #RaynaudsFreeWorld
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May 2017.

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