Scleroderma Awareness Month

June is Scleroderma Awareness Month, and scleroderma communities around the world are kicking into gear to spread awareness about this rare autoimmune disease that I was diagnosed with back in November 2018.

As winter’s chill sets in around Australia, imagine facing the cold with a condition that makes warmth not just a comfort, but a necessity. For over 6,000 Australians living with scleroderma, this is a daily reality.

Throughout June, during World Scleroderma Awareness Month, Scleroderma Australia invites you to “Snuggle Up” and make a tangible difference.

“Snuggle Up for Scleroderma” is more than a call to stay warm; it’s a nationwide movement to raise funds for specialist scleroderma nurses. These dedicated professionals provide essential support, helping patients navigate the complexities of this chronic autoimmune disease.

It is the eighth year of Scleroderma Australia’s Snuggle Up campaign, and your involvement can make it the most impactful yet. Whether you donate, host an event, or simply spread the word, your actions can help contribute towards a warmer, more supportive community for those living with scleroderma.

In the U.S. the National Scleroderma Foundation (NSF) has selected “Stories of Strength” as their theme for this year, encouraging people with scleroderma to share their stories about how the disease has affected them and how they have adapted to living with scleroderma.

They are shining a light on powerful, inspiring journeys of individuals and families impacted by Scleroderma, encouraging people to create short videos detailing their experiences, sharing them with the NSF and on social media with the hashtag #storiesofstrength.

In Canada, the Make a Move for Scleroderma initiative features a variety of in-person fundraising walks with proceeds going towards providing education, support, and advocacy for people with scleroderma.

A virtual option is also available called Move Your Way. “By participating in Move Your Way, you will still be making a move in your favourite way – walking, running or cycling, climbing stairs, doing yoga, gardening, fishing – the options are endless!,” the organization says on its website.

People are encouraged to spread the word on social media using the hashtags #Scleroderma, #HardWordHarderDisease, #MakeAMove2025, and #MAM4Scleroderma.

In the United Kingdom, Scleroderma and Raynaud’s U.K. is also hosting walks and encouraging engagement on social media with the hashtags #SRUK, #sclerodermaawareness, and #takeaction. They are also encouraging people to contact their elected representatives to advocate for policies to support the scleroderma community.

Scleroderma awareness month culminates in World Scleroderma Day on June 29.

The day is part of a global effort to highlight the need to raise awareness and advocate for institutional policies to support people affected by scleroderma. The Federation of European Scleroderma Associations chose that date in 2009 to commemorate artist Paul Klee, who died of systemic sclerosis on June 29, 1940.

Blessings ’til next time 🙂

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Health Update #9

Since having my 1st course of Rituximab via infusion over a month and a 1/2 ago I have started to see some improvements to my Sp02 levels. Overall the weekly average has improved from what they used to be to consistently over 95 which is encouraging 🙂 

Annette has also noticed that the crackling in my breathing especially at night is noticeably better than it was previously, and that my shortness of breath isn’t as bad as it has been of late, especially when walking and talking, or doing some slight exertion.

I have also been part of a University of Michigan Scleroderma study called RENEW, which is a 12-week, peer-led, app/web-based program designed to help people with scleroderma learn skills that can be used to manage disease symptoms and improve their overall well-being.

The study primarily measures changes in fatigue, but also assesses changes in pain interference, resilience and depressive symptoms.

So far, I am almost at the halfway stage and have found this programme very beneficial and have been able to not only identify aspects within my life where Scleroderma is having an effect but also practice new strategies and techniques in assisting to deal with some of the side effects of the disease. 
I just need to be aware of those moments and days when I have the tendency to over do it, as I simply can’t afford to – as there are still days when I feel the effects of fatigue and the body aches and pains, but again they appear to be less often which is a small blessing 🙂 

Just this week we saw my respiratory specialist and he seems quite pleased with how things are progressing and we’ve put in a plan to start slowly reducing my prednisone dosage – making sure that we are very observant of how this may affect my overall well-being and energy levels.

I’m able to return to the office for a couple of days a week when it is not as busy with many people around (Yeah!) Although I need to remain cautious when out and about, socially distancing myself from others, keeping my distance not only while at work, but when meeting with others in confined / close quarters, and for the time being carry on refraining from larger gatherings, especially while New Zealand experiences another wave of Covid.

Steps are currently in place should I get Covid (big red flag on my medical files), catch a cold, the flu or any other type of respiratory infection etc. as my overall immune system is basically kicking back into gear.

The mycophenolate which I’m on will help keep my immune system suppressed enough so that it doesn’t get out of whack and start doing more than it should, and thankfully I don’t need to restart any vaccination processes as the antibodies should still be active in my system from previous vaccinations.

However, it would be extremely beneficial for me to have 2 monoclonal antibodies (tixagevimab and cilgavimab) distributed as Evusheld, which is a combination of antibodies that target different aspects of spike protein on the coronavirus. This is being used preventatively for severely immunocompromised patients at risk of severe illness from COVID-19 in other countries around the world.

It is administered through two separate and sequential intramuscular injections at different injection sites, one in each of the gluteal muscles.

Tixagevimab with cilgavimab was listed on the Pharmac Pharmaceutical Schedule in NZ from 1 July 2022 in anticipation of supplies being made available in the near future.

Pharmac is currently in the process of finalising its Access Criteria for this treatment and expects to provide a notification of the criteria by mid July 2022. Hopefully there’ll be an update in the coming week to advise that it is being funded for those in my situation, otherwise Annette & I have been encouraged to get this – obviously at a price 😦

Who would have thought that I should have paid more attention to studying chemistry all those years ago at school, rather than skipping out on the odd class – oh I know my school science teachers. Although I do remember a lesson in which I got to partake in an interesting science experiment with a lit cigarette and study the effects that smoke can have on a person’s lungs over a period of time.

Scleroderma Awareness Month may be over for another year – However, people affected by this rare and incurable disease are affected by it everyday. This year as part of Scleroderma Awareness Day on June 29 the Federation of European Scleroderma Associations (FESCA) launched the “Find the Light to Bloom” campaign, to help shine a light on the unmet needs of people living with scleroderma and urge policy-makers to make improving diagnosis, treatment and the quality of life a priority.

As part of the “Find the Light to Bloom” journey, FESCA will officially launch a patient survey in the second half of August 2022 and in September they’ll be organising an in-person event in the European Parliament that will focus on Advancing equitable rare disease diagnosis and care: How EU health policy can solve existing challenges.

As for me, I will continue to keep posting and sharing links about the above on this blog, raising awareness of other Scleroderma related information from time to time, and my own health journey.

For I am one of the 20% of approximately one in 10,000 individuals affected by Scleroderma worldwide – You do the math ’cause that wasn’t one of my strong suits at school either.

Hold on what was? Nevermind 🙂 

So, if you are in a position to do so, maybe you can donate some monies to one of the following trusts / groups, or even help share awareness of Scleroderma far and wide on your social media platforms – As one of the “Greatest Gifts” that you can give to people like me who have Scleroderma is sharing and caring. 

The Scleroderma Support and Education New Zealand Trust Givealittle page which has been set up to support & educate people living with Scleroderma, empowering them to make informed decisions regarding their own health care.

The Scleroderma NZ Givealittle page has been set up to raise funds for the national support group which helps patients and their families to cope with this rare and difficult disease to manage.

Blessings ’til next time 🙂

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