He Doesn't Understand

My 15 year old, "Lance", has been very fortunate in his journey with Severe Hemophilia.  He has never had a joint bleed, and has really only had one severe muscle bleed….ever.  He had a low titer inhibitor, one port placed and was immune tolerized within 2 1/2 years.  The port never had an infection.  He had an appendectomy and came through without any problems.

A walk in the park compared to most.

That is why it is so hard to get him to understand the importance of infusing three times a week.  Last night he showed me an area on his upper thigh...a horrible bruise near his groin and it scared me.  That's when I went off on him about the importance of infusing.

 The problem (a good problem) for kids like Lance is that their treatment has been so good and so many bleeds have been avoided, that they do not know what it is truly like to have pain from a bleed (or maybe even know when a bleed is occurring).  Even though Lance has seen his little brother go through hours upon hours of severe pain from a bleed, it just does not register that it could happen to him.

 All I can continue to do, before he leaves the nest, is try to instill in him the importance of his treatment.  Once he is on his own, there is not much I will be able to do, but until then, I'll keep on hounding him about ordering his product and treating.