There are a lot of things that suck about having a rare disease. One of them is living with the sense that you should be grateful for any attention that is being given to your condition and not think about what is being ignored in favour of more popular issues.
Yet sometimes certain things make you wonder. (And in this case I'm not talking about how many of us have doppelgangers within the FOP community.)
The femur. The strongest bone in your body. So strong it usually only breaks in major accidents like car crashes. But in FOP, well, sometimes it just decides to break for the heck of it. What's up with that?
Here's how it happened to me: On March 13, 2017, I was walking down the stairs when there was suddenly a blinding pain in my upper leg. I collapsed. As "luck" would have it, I walk down the stairs backwards, so I didn't fall very far. I also didn't hit my femur at any point. And yet it broke.
Now, the femur didn't just hairline crack. It, like, fully shattered. I am now imbued with a titanium plate over the break (along with a wicked purple scar that winds up the leg). It was so bad the orthopedic surgeon (wonderful guy...thumbs up to him) has (at least once that I know of) used my original x-ray to scare people.
This break could be attributed to Murphy's Law constantly following me around (and in this case the femur would have been broken by the Murphy's Law gnome), but I am not the only one with a femur that decided to spontaneously combust. Mine may have been the most extreme, but others know the pain/boredom of lying in bed as the femur works through the healing process.
The question I now have is why the FOP femur is prone to self destruct.
Is there extra pressure on our bones because of the growth process? Do we have freak femurs? Are evil blood cells waging war in our bodies and are they sometimes placing bombs in certain areas? (That last explanation would actually explain a lot that has happened in my life.)
I don't know if there will ever be a solid answer to why our femurs broke. I'm sorry if you now lie awake at night puzzling over this conundrum and fearing your or your child's femur is going to unexpectedly shatter. But let me offer this final calming note (even though I hate the "If I can do it so you can you!" logic): The femur will heal and you can walk again.
One day shortly after I (/the leg) was declared weight bearing the physiotherapists put a harness around my waist and let me walk. There was no hesitation or stumbling or collapsing. I put one foot in front of the other and walked across the room.
I'm still a little hesitant and working on my new limp, but I can definitely still walk.
You can see below how bad the break was. (Funny story: After the operation I got kicked out of ICU because I wouldn't get off my phone. I think they used it as proof I was fine and didn't need the extra protection/care.)
Damn self-destructing femur. Yet another addition to the list of reasons why FOP makes no sense.