5 things I’m grateful for in our life with hemophilia

Some days it’s easy to see the cracks in our family’s situation — the unpredictable costs, the logistics of keeping medication on hand, the mental load of being a partner to someone with severe hemophilia B and epilepsy.

But every so often, I remind myself that there are also bright spots worth holding on to. These aren’t the kinds of blessings that erase the hard parts, but they do make them easier to carry.

1. We can treat at home. When my husband, Jared, has a bleed, we don’t always have to rush to the emergency room, endure the wait, and explain his entire history to new medical staff. Instead, we prepare a dose of factor IX, set up the supplies, and get to work. Treating at home is a huge gift, sparing us the strain of repeated hospital trips.

We’re also grateful we can rely on charities or request medication from hospitals when needed. It’s often a long and daunting process, but it gets easier the more often we do it.

2. The community knows where to look (and who to call). Here in the Philippines, medication isn’t always readily available. Some months, you have to hunt for it. But the hemophilia community often knows exactly where to look — which hospitals might have stock, which suppliers to call, and how to speed up the process. The community may also connect you with charities that can help bridge the gap when costs or access become overwhelming. It still takes effort, but the guidance means we’re never wandering blindly.

Recommended Reading

November 23, 2022 Columns by Cazandra Campos-MacDonald

The Importance of Expressing and Experiencing Gratitude

3. We’ve gone years without a hospitalization. Jared hasn’t been admitted since about 2017, when he had a freak accident on a pool slide. That gap has meant fewer disruptions, more freedom to plan our lives, and significant financial relief from avoiding costly hospital stays. It’s not a guarantee for the future, but it’s a streak I’m deeply grateful for.

4. Humor keeps us sane. When a bleed slows him down or a joint feels off, Jared will often pop a steroid pill or pain reliever and throw out a humorous one-liner packed with self-deprecation or sarcasm. It’s his way of deflating the fear that could easily take over — a reminder that laughter still has a place here, even in the middle of uncertainty.

5. We have ordinary days. The biggest gift is that life can feel normal. We cook dinner. We binge-watch shows and hit the shops whenever there’s a huge sale. We argue over who left the light on. Those everyday moments are proof that we’re not defined solely by a diagnosis. Even on the days when hemophilia takes hold of the reins, we’re confident in our ability to take back control.

If you live with hemophilia or care for someone who does, what are three things — big or small — you can be grateful for today? They might not cancel out the hard parts, but they can help steady you when things feel heavy.

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, and are intended to spark discussion about issues pertaining to hemophilia.