Hello & Welcome to my 41st episode of the KWH iPad Show! Today’s feature is Rare Disease Day, which takes place annually on the last day of February 🙂
Yes, you read that correctly… On this 3rd day of March, my post’s focus is the last day of February aka Rare Disease Day. Most folks might say I’m a few days late… But is anything ever really late if it’s late on a Leap Year?!? … hmmm, anyhoo … It’s the day that counts, right? And speaking of days, it sometimes seems like there’s a frivolous “day” for anything and everything (these days). But from our perspective, having lived with rare diseases all our lives (my husband’s hypophosphatasia aka HPP and my retinitis pigmentosa aka RP), this particular day is more meaningful than most!
We’re encouraged to see global participation for Rare Disease Day up from 18 countries in 2008 to 85 countries in 2015. The RDD’s campaign objective is to raise awareness about the world’s 6000+ known rare diseases and their impact on people’s lives. And between flying to San Diego for Rare Disease Day 2014 until finally gaining access to unprecedented HPP treatment in 2015, I’ve written about my husband’s ultra-rare HPP disease. Here in blogland, however, it’s been easy for me to keep my RP to myself—with every intention of not ever mentioning it. But today, I’m opting to face my fears for the sake of inner-freedom!
In real life, people’s basic response to my RP is usually either understanding or underestimating. Those who “understand” tend to lean toward sympathy. No one can truly understand, but I realize and appreciate their effort. Those who underestimate tend to leave me feeling “less than” or simply less than the real me 😦 In contrast, stepping inside this blog grants me the virtual freedom to be the real me… That other “me” whose eyes cannot properly see must wait outside in the hallway of my real world’s harsh reality 🙂
So while filling you in on this bit about me might not mean much to anyone else, it’s a big deal for me. Though truly, who can honestly say their lives are untouched by disease? The best we can really do (besides prayer and trusting the Lord with all our heart) is to simply keep doing what we can… with what we’ve got… for as long as we’re able! And when life gives us crutches to lean on, our daily strength comes from leaving our own understanding behind and leaning toward the Creator of all things ❤
Now finally, a positive update of my husband’s HPP progress… There’s been a hint of skip in his step since his first month of treatment 😀 The crutches remain crucial, but the medicine is definitely helping! Now nearly 6 months in, he’s able to sleep soundly and live life more fully—all with less than half the pain meds from prior to treatment!!! 😀 Praise the Lord, for He is good! ❤
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Today is a special day! ♥ Jackie