The ABCs of FD/MAS
One parent’s tips on how to talk to adults about your child’s FD/MAS diagnosis*
The first time I took my daughter to her best friends’ house for a playdate I gave her a kiss and told her to be careful and follow the rules, because she already knew her limitations and how to keep herself safe, or so I thought. In many ways, Katie is a normal kid–she has best friends, she likes hot dogs and french fries, but when Katie was 3 years old she was diagnosed with fibrous dysplasia (FD) and McCune-Albright syndrome (FD/MAS), a rare metabolic bone disease that makes her one in a million. Katie knows her orthopedic surgeon’s number one rule – no ball pits, bounce houses, or trampolines – so I didn’t remind her or share anything special with this friend’s parents. But Katie also has a bit of a wild streak in her, so I really should have been more careful. When I picked her up, I heard all about the fun they had on the trampoline. I felt like an absolute fool explaining that this is a prohibited activity and that Katie knows better, really, she does!
Over the years I’ve gotten better at talking to other adults – grandparents, teachers, coaches, dance instructors, babysitters, or parents of close friends – and explaining about FD/MAS. It’s a conversation that is important even if it comes with its own brand of awkwardness. Advocating for your child in this way is just part of the “rare disease lifestyle” (yes! It is its own brand of lifestyle!). My goal is to provide some useful tips based on what I myself have learned over the past five years of attempting to discover how to both have and fine tune that conversation. Essentially, it boils down to the ABCs of FD/MAS for the adults in their life – Awareness of the disease; Basic understanding of how it affects your child; and Communicate.
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.
So those are my quick tips, my ABCs. If only parenting a rare disease child were that easy. It can be so difficult to not be a helicopter parent when your child is so delicate and fragile, trust me because I am that parent. Over the years, people who do not know or understand have been incredibly insulting to me. The thing is, there is a fairly big difference between their child simply falling and scraping a knee and me determining if I need to call a physician and go for an x-ray or CT. The more you start that conversation, the better they will come to understand. The bottom line is simply that you are your child’s best advocate and it’s going to be OK.
*The views expressed are the opinions and experiences of the author and not necessarily representative of the FD/MAS Alliance’s staff, board, or advisors. This is not meant as medical or legal advice.