Why Advocate?

Why advocate you might ask? What is to be gained? And for who? These are important questions.

And the answer is not a simple one. But the crux is - that without people taking an active role in performing and undertaking advocacy roles, positive and effective change will not and can not occur. 

As Dr. Seuss says in, The Lorax; 'unless someone like you cares a whole awful lot, nothing is going to get better. It's not.' In The Lorax, Dr. Seuss is talking about our responsibility to care for and look after the environment, not health advocacy. But the central theme remains the same, one of advocacy, and the landscape in health advocacy whilst not the physical natural environment, the term, healthscape can be used. It's about improving and expanding our healthscape. 

Advocacy can be intrinsic to one's well-being or be at a group, peer, community, or organisational level. Intrinsic advocacy is purely for your cause or benefit. This form of advocacy isn't always obvious. Many patients would not consider themselves to be, 'an advocate'. But they are.

Nearly every patient would have at some stage in their health journey had to advocate for themselves. Be it pushing for a referral or scan, or the bigger stuff like pushing for a diagnosis - combine these two and you are pushing your process with the smaller stuff, i.e: scan, referral, to aid and hasten the diagnosis.

Improved speed of diagnosis is imperative for improved access to care, but also integral to achieving a sense of personal validation. Validation that may be necessary to squash any internalised, perceived, or social stigma.

Advocacy at a community, peer, or organisational level, is equally as important as self-advocacy. The effort of a collective to affect change. To change policy, implement procedural revamps, and provide training and education to upskill and surge the capabilities of clinicians to provide a better, more cohesive, comprehensive, and collaborative service to patients. This is advocacy that has the potential to positively impact whole communities, whole cohorts, and subsets of patients who otherwise may not have had their illness or disease realised, validated, and in turn diagnosed; achieving effective treatment and or management plans.  

Advocacy is key to helping ourselves but also helping others. Through our shared experience we can clarify the path forward for each other. We can simplify and streamline, advising people who seek our advice; as to where they might start and clinicians they might see. 

And this is why I push on - advocating for myself on my medical journey but also making attempts to build a robust community with whom I will advocate both for and alongside, in partnership.

So jump on over to the Zebra Blends online store, ALL purchases help support rare disease and chronic illness research and advocacy - 50% of profits are donated directly to our chosen charity, Rare Voices Australia

If you wish to find out more about advocacy for rare diseases head to Rare Voices Australia or check out The Ehlers Danlos Society's website for information on EDS.

As always, reach out to me with any questions, or to discuss collaborations; supporting these causes is central to my ethos.


Janna x

Zebra Blends Founder



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