The ABCs of FD/MAS

A – Awareness of the disease. As a parent managing a rare health condition you likely have a better understanding of FD/MAS than the average physician, but a more watered-down version should suffice when explaining to other adults. I usually tell them that Katie has a non-inherited genetic condition (yet people never fail ask from which side of the family it comes!) that affects her hormones and bones. She takes a breast cancer drug to help control her estrogen levels, which works perfectly well for her. Since the involvement with her bones is our biggest concern with regard to activities, I go on to explain that her bones are basically akin to eggs, having a thin shell and filled with goo, thus making them fragile and prone to fracture. Even with all that, I emphasize that she still gets to run, play and be a kid.

There are some adults who require a more detailed description because they spend so much of each day with your child, say her homeroom teacher.  In that case, I often send an email with a link to the FD/MAS Alliance website, because, where else can you find as much information in one place? 

Perhaps even more important than informing these adults is educating your child to advocate for themselves

Soon after my daughter turned 5, we were at a park with friends and the kids were jumping off a boulder. When it came to be her turn, I very clearly heard her tell the other kids, “I can’t do that because I have a fragile leg.” I was so very proud of her, and of all the kids because they immediately accepted that and decided to continue running through the park instead. 

B – Basic understanding of how FD/MAS affects your child. Right after my proud park moment, on our way back to our picnic spot, Katie began limping the limp, her own telltale sign of a stress fracture at the hip. Other adults may not need to know every detail of your child’s medical history, but it’s helpful for them to have some basic information of what to look out for during any given activity, like orthopedic symptoms that may signal something larger.

Coach others on what to ask about if they do notice something off, and remind them to do so without singling your child out.  They likely already feel different enough. 

Depending on the situation, there’s other pertinent information like the possibility of her starting a period (though her hormones are well-controlled with medication), or that she has a few small areas of FD in the skull (so basically she must be watched from head-to-toe, even though she appears to be perfectly healthy and normal from the outside). 

Since we are dealing with a spectrum disease, and a mosaic one at that, having all that information can seem a bit overwhelming and even frightening to someone who has just learned about FD/MAS for the first time. Think about how you felt when you first dug into the available information upon diagnosis. One time, I received a phone call from school that she fell on the playground and they needed to know what to do with her. I asked some basic questions about how hard the fall was, from how high, was she crying or complaining. When they confirmed that neither was the case and that no bones or metal were protruding from her leg, I thanked them for their concern and phone call and assured them that she was probably just fine, which thankfully she was. 

C – Communicate! What about when there is a sudden change in your child’s health or mobility? Communicate, communicate, communicate! My daughter was diagnosed a few weeks after starting at a new preschool, and her teacher was wonderful. Six months later we experienced her first stress fracture and had to go in and explain her hip/knee/ankle brace to the teacher and how to take it off and put it back on each time she needed to use the restroom. This teacher was a rock star and had become a fierce advocate for my daughter, she never allowed her to feel different and took all the changes in stride. This encouraged the other kids to be incredibly accepting and not treat her any differently. We were fortunate to have her as a teacher for both the three- and four-year-old classes. We continue to gather heroes like this in our lives, our babysitter and the school’s principal come to mind immediately. People who we know we can turn to when we are going through another rough patch. We know these allies will go above and beyond to make sure that Katie’s experience is everything it could and should be.  

It can be helpful for teachers, coaches, etc. to communicate not only with you but also with your child’s physicians (this is where a great physiatrist comes in handy!) about ways to adapt programs & activities for your child. What restrictions does your child have? What are their “normal” activities and the “proceed-with-caution” activities? These are things that aren’t exactly the safest for your child to do but sometimes you need to allow them to just enjoy being a child. Encouraging open communication will make everyone, and most especially, your child, more comfortable.