Scleroderma Awareness Month: a Flashback

Well, unless you had a month away from your internet connection, you probably know that June was Scleroderma Awareness Month, with World Scleroderma Day highlighting 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 5 p.m. until the next working day. We are living and breathing this as our reality, 24 hours a day, seven days a week, and so (for me at least, and I am sure that I can speak for every scleroderma patient on this), there is an urgent need for an improvement in the current scleroderma patient landscape. The awareness month and featured World Scleroderma Day can be optimized as a springboard in helping with this.

Thank you to Sharon Esposito for producing such wonderful images for awareness throughout the month, including the one featured.

Here 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. I am delighted that they were of interest. My intention was to focus on the many current unmet needs of scleroderma patients, in the hope for improved understanding and treatments to be made available.

Here is an index to the subject of each post, with the date followed by the subject of the post:

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 Digital Ulcer Policy
10. Skin involvement
11. Gastrointestinal
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. Gastrointestinal upper
22. Journal of Scleroderma and Related Disorders (JSRD)
23. Kidney
24. Digital Ischaemia management
25. Pain, hair loss
26. Gastrointestinal lower
27. Skin, Telangiectasia
28. Other symptoms (cellulitis, vitiligo)
29. World Scleroderma Day
30. Patient healthcare dream team

You can also find these posts and all of my other blog posts by visiting https://sclerodermanews.com/category/blog/ and scrolling down.

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

• This year saw scleroderma patients, along with their families and friends, participate in various walks across the U.S. organized by the Scleroderma Foundation. For more information about the events, click here.

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

• Actelion, the pharmaceutical company, put together a very informative clip focusing on the true reality of the day-to-day lives of two different scleroderma patients. To watch, click here.
• On June 7, the SRF also held their signature Cool Comedy Hot cuisine night with Bob Saget in San Francisco and raised an awesome $600,000 for research.
• FESCA also put together a YouTube clip about a fairy princess in line with their “hand in hand for a better future” campaign. To watch, click here.

• The pharmaceutical company Boehringer-Ingelheim put together a clip which focused on scleroderma patient Ilaria. To watch, click here.

However, in my view, the accolade for showing the rest of the world 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 managing for the CN Tower to be lit up in blue, but also for the awesome effort of organizing Niagara 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 put 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 25 at Budapest Park, Toronto, along with other runs, making a fantastic 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. Scleroderma Netherlands held a visual art exhibition at the European Parliament in Brussels, attended by James Carver, MEP, whose late wife Carmen sadly passed away of scleroderma at age 42 on Dec. 31, 2009.

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:

http://www.southportvisiter.co.uk/news/southport-west-lancs/i-feel-like-tin-man-11407270

http://www.liverpoolecho.co.uk/news/liverpool-news/real-life-tin-man-who-11417645

http://www.dailymail.co.uk/health/article-3620283/It-feels-like-body-wrapped-barbed-wire-dipped-concrete-Woman-s-joints-stiff-lie-oil-three-HOURS-move.html

https://www.youtube.com/watch?v=eszH-nnwfDs

http://www.chinatimes.com/search/result.htm?q=Nicola%20Whitehill#gsc.tab=0&gsc.q=Nicola%20Whitehill&gsc.page=1

https://translate.google.co.uk/translate?hl=en&sl=tr&u=http://fotogaleri.haberler.com/nicola-whitehill-in-hayatini-kabusa-donduren-olay/&prev=search

I was, and remain, 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 June 29, in honor 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 best practice for scleroderma and Raynaud’s 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.

Here is the link:  https://plus.google.com/communities/115644437712711107914

Although my fingers and eyes have been on strike for the first week of July after overuse from 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 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.

Note: Scleroderma is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this blog article are not those of Scleroderma News and are only intended to spark discussion about issues pertaining to the disease.