Posted by Karen

This week we had a couple of experiences which got me thinking about the approach we take to life with Fibrodysplasia Ossificans Progressiva.

Let me start by saying that I’m pretty content with “where we are” in terms of having accepted FOP.  Neither I nor any of my family are depressive or downcast by nature, and so we didn’t spend forever wallowing in sadness after our Miranda’s diagnosis almost 3 years ago.  Yes, we struggled with it, and had to work stuff through, but after several months we got to the point where we could happily carry on with life.  Over the last couple of years or so, our approach has been healthy, I think…  Speaking for Pete and I, we mostly focus on Miranda as a whole child, and FOP as only one facet of her life.  We laugh at Miranda’s hijinks, play with her, take her to do various activities, get her to do chores, plan for the beginning of school, dream about her future and do all the things any parent should for their child. 

Here's my fun-loving gal having a laugh at our kitty sitting on the bathroom counter.

Learning about the amazing community of people with FOP in the world has helped us get to this place.  There are people with FOP who are graduate and medical students, who work and run businesses, who play musical instruments, who raise awareness of and fundraise for FOP, who are married and parent children, who are artists, and, most important of all, who lead happy and fulfilling lives.  All of those people have shown us that even if an effective treatment for FOP is NEVER developed during Miranda’s lifetime, Miranda can still have a terrific life and FOP doesn’t have to prevent that.

And so, turning back now to the two events of this week…  The first was an appointment with a specialist following Miranda’s case.  This doctor isn’t one of her primary caregivers; rather, “Dr. E” just sees Miranda once per year to follow up and see how she’s doing.  First, we had to wait quite a while for Dr. E to arrive.  I’m not critical of the doctor for that, as I appreciate that physicians often have delays they can’t predict or control.  However, let’s just say that it contributed to us feeling kind of impatient by the time the appointment got underway.  Anyway, first, Dr. E had a medical student come in (I think BC Children’s is a teaching hospital, as we see this often).  The student knew nothing about FOP, so I explained it.  The student was quite amazed, but thoughtful and respectful.  That part was OK.  But then, in came Dr. E with another student in tow.  Dr. E didn’t bother to examine Miranda, and instead just told the students in dark and dire terms about all the negative consequences of FOP, and then swept out and left.

A lot of things bothered me about this appointment.  First, why didn’t Dr. E examine Miranda?  Isn’t the whole point of us coming for Dr. E to become familiar with Miranda’s physical issues as she grows older?  Second, I was getting pretty nervous about what Dr. E was saying around Miranda, who, at age 5, can understand a lot more than she did at age 2.  We are open and honest with Miranda about her FOP, but in an age-apropriate and “need to know” kind of way…  I didn’t appreciate how Dr. E blathered on, unconcernedly, about all kinds of stuff that Miranda didn’t need to hear and could just about understand.  Third, it bothered me a lot that Dr. E seemed to have such a negative view of everything, and offered not a word of encouragement or support.

OK, OK, the critics among you might well point out that Dr. E isn’t a social worker or counsellor whose job it is to make people feel better; Dr. E’s job is to render medical treatment where possible and train students to do the same.  I get that, really I do.  However, I believe that a big part of being a doctor is showing a positive “bedside manner” and encouraging patients to do as well as they can  Dr. E did NOT do that, and after Dr. E’s talk to these students, I’m guessing that if they ever encounter another FOP patient, they’re going to be pretty negative and pessimistic.

Aside - I did my best to help these students at least get an accurate learning experience out of the exercise.  I took it upon myself to tell them about the characteristic FOP toes and how to recognize FOP (Dr. E did not do this).  I also told them about the informative IFOPA website.  If nothing else, the students are now aware of the important signs and an information source…

Anyway, by the time we left this appointment, I was feeling pretty down and negative about stuff.  More than I’ve been for a long, long time.  On our way home, I had to sit and consciously think through the whole thing, and forcibly “re-orient” my thought processes back to feeling positive. 

So then, a couple of days later I had an experience which was quite diferent.  I finished work a bit early to have a chance to run by the principal’s office at the school where my Owen (age eight) is currently a student and where Miranda will begin kindergarten in the fall.  I wanted to make an appointment for another day to talk about Miranda and the special requiements she’ll have when she starts school.  I thought I’d just book the appointment and then go pick up the kids, but as it happened, the principal was right there and asked me to come in and talk to her on the spot.  And so, I did.  The principal had seen Miranda before, but had no knowledge of her issues, so I explained the basics of FOP.  I REALLY appreciated her reaction.  She just listened, wrote some notes, paused, and then said, thoughtfully, “Hmm, OK, so I guess she’ll need a one-to-one educational assistant.  Here’s what we need to do to get that organized…”  She was very matter of fact about the whole thing, and didn’t blink an eyelash about any of it.  It was, I think, a very helpful and healthy approach.  I came away feeling like she cared about making sure Miranda gets the assistance she needs to thrive at school, just like any other child.

One week, two very different experiences.  Can you guess which of these two professionals I liked better? 

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