Today is AMC Awareness Day.
It’s a curious thing, having a child with a condition that has a day that is dedicated to its awareness.
What’s even more curious, is your child having a condition that is rare enough that the day dedicated to its awareness was only declared 12 years ago, and currently lacks national recognition. In fact, our home state of Kentucky only just had the proclamation declaring June 30 as Arthrogryposis Multiplex Congenita Awareness Day five years ago.
They declared AMC Awareness Day as June 30, because June 30, 2005, was the day that the website AMCSupport.org was launched. Ani Samargian, a mother to an AMCer created the AMC Support group because of how little information there was available at the time, due to AMC’s rarity. Two years after they launched the site, Arthrogryposis Multiplex Congenita Support, Inc., became an official non-profit.
Thanks to the dedication and work of Ani Samargian, we have a day geared towards bringing awareness to HG’s condition. We have hashtags, a ribbon color, t-shirts, and all the common things you see for bringing awareness to a condition or disease now.
It’s a weird thing to wrap my head around at times, and I admit I should have and could have done more for our first AMC Awareness Day.
As someone who has never been comfortable or all that efficient in self-promoting, it’s not a thing I naturally do. I don’t like bringing attention to myself or my family, not overtly. I’m one to promote my wife’s photography way before I promote my design work or websites. That’s just how I’ve always been. So to now have a day dedicated to bringing awareness to the condition my son has, along with the entire month building up to that day, it’s one of those mental hurdles I have to get over.
There’s so much more I need to do and should do.
Yes, I wear blue for my son. I have my AMC Awareness bracelet I wear daily. I have another navy bracelet I’ve had since the week we came home. My wedding band is blue. I changed the logo on my website from red to blue. Between blue being the color for AMC Awareness, and my wife’s middle name also being Blue, I’m always representing. Those are the ways I do things typically. Not in your face, not outlandish, but subtle. Things that are much more for me personally than for the public at large.
The thing is, AMC is something I shouldn’t be subtle about. Not when we can bring awareness. When we can bring attention to a condition that so many people have never heard of, while so many others are affected. Not just for the benefit of our son, but for the entire community we now find ourselves deeply in and invested in.
This is our first AMC Awareness day. We’re still getting our feet wet with all this. Still learning to navigate this life we have before us. Still struggling to find the balance of work, life, therapies, doctor appointments, heartache, and frustrations.
It’s hard. Harder than I’d care to admit because a lot of it feels selfish. There are still times where having a child with a condition that has an awareness day just feels unfair. On the other side of that coin, it’s unfair to HG that I have that selfish mentality at all. That all my thoughts and energy should be directed and geared towards helping him and others.
Today is AMC Awareness Day. Our first AMC Awareness Day. We will wear blue for our son and all AMCers. We will share social media posts, we will do what we can to bring awareness. And I will continue to share our stories, struggles, and victories.
While June 30th is acknowledged as AMC Awareness Day, Arthrogryposis Multiplex Congenita Support has been bringing awareness this entire month of June, by sharing an AMC fact each day, sharing and posting about the AMC community, and encouraging everyone to wear blue on June 30th.
Some of the AMC facts that they have shared this past month include:
- Arthrogryposis occurs in 1 in 3,000 live births
- AMC is non-progressive but the contractures can recur after treatment.
- There is no cure for arthrogryposis.
- There are over 400 types of arthrogryposis.
- Arthrogryposis is not a newly identified condition. Adolph Otto officially described it in 1841. Literary
- evidence of arthrogryposis dates back as early as the 12th century. In 1642, a painting entitled “The Clubfoot”
- located in the Louvre, portrays a beggar believed to have a form of AMC, though the specific type is still
- debated among experts.
For all 30 facts, along with more posts from the AMC community, tons of AMC information, and the chance to donate, be sure to follow AMCSI on your desired social media platform: Facebook, Instagram, Twitter.