Hemophilia can affect anyone. Let’s make a few things clear:
Women are carriers of hemophilia and pass the gene, but men determine the child’s gender. It’s not all on you, mom. Remember, hemophilia is no one’s fault. Parents are never to blame.
Female “carriers” can still have hemophilia symptoms and may still need treatment.
Caregivers and care partners are anyone who provides emotional or physical support to someone with hemophilia. This means caregivers aren’t just moms or dads; they are grandparents, siblings, friends, teachers, etc. Care of a child with hemophilia shouldn’t be discussed with reference only to mothers.
We can’t forget to discuss female carriers who are also caregivers to a child with hemophilia. These individuals must balance their own illness as well as the illness of their child. This is a double burden that is too often ignored.
Hemophilia is truly a family affair and will impact all family members in some way. It’s important to realize the patient is not the only person who may need support.
We need to be more careful of the language we use when discussing hemophilia. For instance, we say things like “his health care” or “mom’s support.” Many studies examining the lives of caregivers and the support they need focus solely on mothers. We need to understand that everyone affected by hemophilia needs and deserves support. Sometimes, you don’t know how much you need that support until you receive it, but it’s something that everyone can benefit from, regardless of their role in the scenario.
Support groups are a great place to start. If you can’t find one, don’t be afraid to start one. I guarantee you there are other people living with a hemophilia diagnosis in your area.
There’s a persistent issue in our society of men, in particular, being afraid to express their feelings, so they are generally more apprehensive than females to join a support group. But let’s make one thing clear: even perfectly healthy men need support.
It’s time we rid ourselves of stereotypes, and understand that hemophilia effects everyone involved in some way. Each and every one of those individuals, regardless of their gender, deserves to be supported.
A hemophilia diagnosis can be complicated, but support shouldn’t be.