Invisible Illness Week 2015: Our Rare Treasure
This week I’ve been sharing different aspects of invisible illness as it regards to our family and those who have a diagnosis that is real, but perhaps not visible. My hope is we all take a look at how we approach situations like this and find ways to improve.
Today I want to share the best source I’ve found so far to describe one of the issues our daughter has. Although she was diagnosed with Albrights Hereditary Osteodystrophy a couple years ago, we weren’t told much. We knew we had to watch her calcium, Vitamin D and phosphorous levels to avoid seizures and help her joints.
It was a couple months ago I was floored, and honestly, devastated at times, when we learned more about AHO and how it affected our daughter. Talk about invisible—in a matter of months her bones fused so fast that I was given the news that at 12 years old and 4’8″, she was done growing. Talk of hormone injections were tabled because it wouldn’t help her grow. If we used them to stimulate menstruation as her bones measure her at 17 years, it would make her bones fuse faster. We have been told when this process starts naturally, her bones will continue to fuse.
It’s typical for me to run and research. I want to be armed and informed the best I can to advocate for her. I’ve learned that AHO is a rare disease, that less than 200,000 people in the US have it.
One thing I found was a video from a 2010 piece on 20/20 called, “What’s Wrong with Carter?” I found it very informative and was able to touch base with Carter’s mom and share notes. There is a lot there is similar, although I believe Carter has a chance at height that we might not have.
It’s obvious there is so much for the doctors to discover here. We’re learning as we go. And trusting God along the way.
If you’d like to watch the 20/20 piece, click here.
