#patient advocacy
Today is Rare Disease Day and I’ve had a bit of a rant over on Twitter about it.
I think it’s vitally important and advocacy and awareness is the only way things will get better for the millions of people with rare diseases. But it frustrates me so much that we’re largely just an echo chamber.
Collectively, more people worldwide are affected by Rare Diseases than Aids and Cancer combined. Yet, when it comes to awareness events I rarely see anyone but those directly affected by rare disease discussing it (that being patients and family of patients). Other awareness events have people all over the Internet taking part and joining discussions, doctors and nurses wearing pins and stickers, hospitals and corporations and individuals with fundraisers and informational materials. With #RareDiseaseDay and the various disease specific events throughout the year it’s hard to get anyone outside of the community to even retweet/reblog something or make a simple post on facebook. Let alone any of the more important things like having doctors and other medical professionals/institutions pay attention. I find it deeply disheartening and it makes it incredibly difficult to continue to advocate during these events.
What are we achieving? Will people not have to wait decades like I did for a diagnosis? Will doctors stop being skeptical and dismissive? Will we get actual treatments? How do we inspire these awareness events to break out of the damned Echo Chamber??
disclaimer: I do realise that there is some trickle-through and the events do raise awareness and give help to those struggling to find a correct diagnosis, and this is obviously very valid too.
2017 WEGO Health Awards–Vote for The Headache Heroine!
I am excited to share (even though I may have already initially shared) that I have been nominated for the WEGO Health Award in the 6th Annual WEGO Health Awards! Last year I was nominated for three categories and a finalist in two. This year, I’ve been nominated for two categories: Best in Show: Instagram and Best in Show: Twitter. WEGO Health is a mission-driven company connecting healthcare…
“We have to pull it. Nothing else is covered.” The dentist would say, looking at me like I should be glad to get even that bit of charity. Tears would fill my eyes as yet another tooth that could have been saved was yanked from my head.
When I was younger, we were riding in my grandfather’s truck when my grandmother tickled me and I broke my front tooth on the dash, leaving the root exposed. The next day, we went to the dentist, who performed a root canal and placed a temporary cap on top. A year ago, I learned that my mother didn’t have dental coverage at the time and that the dentist had provided this service (and many others in my childhood) for free. I can smile confidently because someone went out of their way for me. Although no one should be shamed for the state of their oral health, everyone should have the right to a confident smile regardless of their ability to pay.
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