30th June 2016

World Scleroderma Day

Yesterday, 29th June 2016, was World Scleroderma Day.

Scleroderma is a rare, systemic autoimmune disease that leads to disability and can be life-threatening.  Although its name comes from its core characteristic – hardening (sclero) of the skin (derma) – it becomes more severe when this hardening affects internal organs.  One of the diseases associated with this form of scleroderma is pulmonary arterial hypertension (PAH), a disease area in which the Solaris Health team has been working since 2011.

It can be hard to measure the effectiveness of disease awareness days and campaigns – are they just about raising the general public’s awareness of these conditions? Is it only about raising charitable donations and funding?

Even when a campaign captures something in the public mind (the ALS Ice Bucket Challenge would be the best example we can think of in recent times) many questions are asked about whether they really ‘worked’, whether enough emphasis was given to the disease vs the activity, and even whether the ‘right’ disease benefited.  It can be pretty unfriendly out there.

From our perspective, the community value – to those people suffering from the disease, their friends and relatives, and everyone who works to support them: charities, healthcare professionals, and pharma companies developing therapies – is very high, and extremely well deserved.  Living with a rare condition can be very isolating, and even more so for diseases that affect everyday activities. 

The concept of Slacktivism (social media engagement for these causes) is not a new one – and many have said that for a disease awareness campaign to be considered really effective it should raise more money and/or initiate real-world action.  On the other hand awareness is a first, and necessary, step to changing behaviour.

The challenge, when there seem to be 3 or 4 awareness days every week of the year, is to be different enough to elicit a change and make it last.

Death_and_Fire.JPG

(The image above is one of the last that Paul Klee painted before he died of scleroderma in 1940)