When you have a bleeding disorder, you are part of a community that becomes family. You never completely leave them, and they never leave you. The disorder binds you for a lifetime. When your bleeding disorder wreaks havoc, you tend to reach out to your bleeding disorder family more often. They are the only ones who can truly empathize with what you are experiencing. Your biological family often cannot understand the depth and complexity of your situation. When your bleeding disorder is under control, and you even become a little complacent, you move along life’s path without much worry. It’s a time when you may not be in touch with your bleeding disorder family. But when you have an inhibitor, it’s a little different.
Having an inhibitor puts you in a very small, special subgroup in the bleeding disorder population. It’s a group you would rather not become a member of. But when you do, you quickly find others in the same situation. Your physician may know another patient with an inhibitor, there might be someone with it in your local chapter, or you might find an inhibitor group on social media. I belong to an inhibitor Facebook group that has been amazing over the past 11 years. The group is not afraid to ask questions, and members always chime in with observations or advice.
I was recently surprised by a father’s post in the group. I could almost “hear” his tail between his legs — he and his son were retreating back to the community. His son’s inhibitor returned. He apologized for not being active in the group — he’d stopped posting when his son’s inhibitor was tolerized. If it were me, I probably would not have been very involved either. It was as if he felt bad because he’d let his guard down before the inhibitor came back. What I love is our group welcomed him back (despite feeling terrible that he was back) and showered him with encouragement.
When Caeleb’s inhibitor reached zero, we were ecstatic! I shouted it from the rooftop! But it didn’t last, and his half-life was never very good. But I think it is important that we celebrate when we reach milestones. We should never let numbers dictate our success, but we must celebrate when we can. Even though his inhibitor is still active, his quality of life is great. I haven’t needed to rely on my inhibitor family as much, but I know that if I ever have a question, they will be there for me no matter what.
Truth is, inhibitors can come back. We should never feel we have let our child down — it’s just something that happens. If you leave the inhibitor community because you or your child is tolerized, they will be the first to celebrate with you. And they would love it if you never returned.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.