I've become a lot of things in my life. A student. A bratty teenager. A blushing bride. A journalist. An aspiring writer (on my own terms).
But becoming a mother is the one that has finally shown me what my parents meant when they sighed and said, "You aren't going to understand until you have your own."
I get it now. I do.
Like any parent, I'd do anything for my child. And what follows here is a guest post by Juliette Terzieff about an ever-growing number of moms and dads willing to do the same for a world of children suffering from rare diseases. I'll be wearing jeans on Feb. 28. Will you?
Most mothers will do anything to protect their child’s best interests and help them succeed. It’s part of being a mom – a reflection of that overwhelming, all-encompassing love that we feel for our tiny mini-mes.
So I guess it’s hardly a surprise that battalions of mothers (and fathers!) out there have joined together to support the campaign effort to raise awareness about Rare Disease Day, February 28. The slogan for this year’s campaign is “Hope – It’s in your genes.”
These parents are simultaneously just moms and dads like any of us, and amazing individuals willing to step forward and try to make a difference. They, and the campaign, deserve our support.
The campaign is simple, as campaign organizers explain:
"[an]occasion to inform or remind people that rare diseases need to be paid special attention to, because:
The lack of specific health policies and the scarcity of expertise translate into delayed appropriate diagnosis and difficulty of access to care.
Rare diseases are life-threatening or chronically debilitating diseases with a low prevalence and a high level of complexity. Patients with very rare diseases and their families are particularly isolated and vulnerable ….
The rare disease patient is the orphan of health systems, often without diagnosis, without treatment, without research, therefore without reason to hope."
While it may sound like an oxymoron thousands of rare diseases affect tens of millions of people around the world – 30 million in the U.S. alone.
The Global Genes Project is helping to drive the campaign with information and ways to get involved found here.
There are several easy ways to get involved:
- Wear jeans and/or a denim ribbon on Feb. 28 to show your support.
- Follow campaign supporters/leaders like @GlobalGenes @RareDiseases @RareDiseaseDay and @CRDNetwork on Twitter – and Retweet their campaign messages.
- If you are on Twitter, Tweet out to your followers on Rare Disease Day and trend #raredisease and #blog4rare
- If you are a Facebook user, get involved, become a fan of the Global Genes Project here.
- Blog about Rare Disease Day like mom @sneakpeekatme did on her blog “Sneak Peek” – Then send a link to your blog to another mother-activist @supercatcalhoun who is publishing a running directory of Rare Disease Day blogs.
- And, of course, follow me @SpecTeams and come join the #specialteams – a community for parents, caregivers and supporters of ill or special needs children – for more information, support and opportunities on efforts like Rare Disease Day.
This post originally appeared on Juliette Terzieff's website.