Calvin, 22q Deletion · Henry, Dup15q

Getting Ready for Rare Disease Day

Rare Disease Day is February 29th!

That’s this coming Monday, you guys! Join me in raising awareness and support for individuals with rare diseases and disorders.

wrdd-frames5

So, what is Rare Disease Day and why do I care about it?

From RareDiseaseDay.org

Rare Disease Day takes place on the last day of February each year.

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Read more at http://www.rarediseaseday.org/article/what-is-rare-disease-day or https://globalgenes.org/world-rare-disease-day/

I first read about Rare Disease Day last year when other dup15q and 22q parents and adults were using the day to advocate for these genetic conditions. And to be honest, it gave me a big “Nope” feeling because the use of the word disease in reference to my sons’ disorders didn’t feel right. In fact, I know that some people in the 22q community would prefer not to use Rare Disease Day to advocate for 22q awareness because they feel that the distinction is so important. It’s true: 22q deletion syndrome and dup15q syndrome are genetic disorders, not diseases. You can’t catch them and you can’t cure them. But Rare Disease Day, despite it’s possibly misleading name, is a day to advocate for both diseases and disorders.

This year, I feel like I’m ready to embrace Rare Disease Day and use it as an opportunity to raise awareness and spread knowledge about Henry’s rare syndrome, dup15q, and Calvin’s not-so-rare syndrome, 22q deletion.

Here’s why I’m embracing Rare Disease Day this year:

  • Awareness drives a demand for research. Although there is no “cure” to search for in terms of 22q and dup15q, research informs medical treatments and early intervention for conditions associated with these syndromes.
  • Awareness facilitates empathy. There’s a quote I’ve seen a lot lately, “Be kind, for everybody is fighting a battle you know nothing about” (Wendy Mass). Once we started opening up about our kids’ diagnoses, people started responding with empathy. Of course they haven’t been in our exact situation, but there are feelings that are a part of our experience that many other people can relate to: fear for our children, stress over services and appointments and paperwork, joy over a milestone reached at last, and so on. Sharing our story is also a step towards opening ourselves up to accept support.
  • Awareness combats stigma. “Differentness” threatens our sense of belonging. It threatens our sense of whether we are worthy of belonging. People, and especially children, living with diseases and disorders are so often regarded with pity for being different. The implication is that their differentness makes them less. I want to take this chance to stand up for my kids and people like them with different ways of living and learning and say “Different is not less!” See them, read their stories, see their worth.

calvin and henry care about rare

I’ll be showing my support and advocacy on Monday by sharing facts about 22q and dup15q here on the blog and on our social media pages.

Please join me in raising awareness and showing support!! Here are some ways you can participate in Rare Disease Day :

  • Post a pic!

Global Genes has a few downloadable graphics on their website that you can share on social media: World Rare Disease Day Assets. Or, if you want to share my graphic above with Calvin and Henry, send me a message and I’ll send you the .jpg 🙂 And don’t forget to check us out on social media! You can share one of our Rare Disease Day pics from Facebook, Twitter, or Instagram. When you share your Rare Disease Day posts, use hashtags like #rarediseaseday #rarediseaseday2016 and, if you want to shout out for Calvin and Henry, #22q #dup15q

  • Wear jeans!

Yes, fellow mamas, I’m asking you to skip your daily leggings or yoga pants just for one day! (I’ll miss mine too!!) Denim is the “color” of choice for Global Genes’ awareness campaigns. (Get it? Jeans for genes!) Can’t wear jeans to work? Maybe you could get an exception to spread the word about a worthy cause. Read more about the Global Genes awareness campaign at Wear That You Care. Take a pic of yourself rocking your jeans and post it on social media #rarediseaseday!

  • Make a donation.

Donations can help fund research, treatments, respite for caregivers, conferences and seminars for families, and more. Of course I would love for you to contribute to The International 22q11.21 Foundation or the Dup15q Alliance, but please support whatever rare disease or disorder you feel called to!

Donate to 22q ❤

Donate to dup15q ❤

  • Tell your story.

If you or someone you love is living with a rare condition, here’s a great chance to tell all about! Advocate for yourself or your loved ones by getting on social media and adding your voice to Rare Disease Day.

  • Share our story.

Feel welcome to share Calvin and Henry’s stories from the blog or from our social media pages. Just, please be sure to credit surprisinglyspecial.com 🙂

wrdd-2016-heart-cta

 

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3 thoughts on “Getting Ready for Rare Disease Day

  1. Yeah, I’m gonna need that adorable picture of the boys. I’ll post it on Monday and link to SS. Miss you and love you lots.

    Sent from an iPhone – sorry for typos/ tenseness

    >

    Liked by 1 person

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