The bleeding disorders community eased the isolation of hemophilia

I grew up in a mostly white suburb of Houston. My dad, who was of Mexican descent and had dark skin, spoke English as his second language. He worked hard, went to school, and earned both his bachelor’s and master’s degrees in education from the University of Texas. He became a respected educator, and teachers often sought to transfer to the school where he was the principal. There was a long waiting list because those who worked there didn’t want to leave.

But there’s one thing my educator father didn’t teach me that I wish he had. My dad didn’t teach me to speak Spanish.

My dad believed in the 1970s that his daughters should speak English and fit in. He faced discrimination because of his skin color and didn’t want us to be exposed to that, too, though we still were.

Being a Spanish speaker in an English-speaking setting can feel lonely and draw attention to your difference. It’s like dancing the foxtrot while everyone else is pairing up for a rumba. As an English speaker who often meets families who only speak Spanish, I can understand that feeling of isolation.

That same sense of isolation later resurfaced in our life with hemophilia.

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My sons, Julian, 30, and Caeleb, 20, both have severe hemophilia A and developed antibodies, called inhibitors, to their blood clotting therapy. Julian’s inhibitor went away when he was 4, but Caeleb’s has been there since he was 11 months old. Caeleb’s severe inhibitor showed me how isolating hemophilia can be. It affected almost every part of our lives in ways most families never have to think about.

Whenever Caeleb was in the hospital, I stayed with him. The days passed quickly, but the nights and early mornings felt long. In the dark, with only my laptop for light, I felt alone, scared, and exhausted as I worried about what would happen when he woke up. Would he be screaming in pain? Or would he sleep for more than three hours? Did any other moms experience these issues?

While other kids ran and played, I had to find activities that wouldn’t hurt my son’s knee and ankle. I watched for the first signs of a bleed and hoped to treat it before his knee or ankle swelled and became painful. The worry about what might happen next was always with me.

What helped ease that isolation was finding a place in the bleeding disorders community. For the first time, I was with people who understood my worries, successes, and heartbreaks because they had been through them, too. I met other moms who knew what it was like to sit by their child with hemophilia during long nights of infusing every two hours. They understood the struggle of helping their child join in with friends, even with a bad knee. Most importantly, they shared their stories, and I realized I was not alone. The feeling of isolation started to fade.

Looking back, I think my father wanted his daughters to feel like they belonged. In an unexpected way, hemophilia showed me how much we all need connection with people who understand us. The bleeding disorders community became that place for our family. With others who had faced bleeds, inhibitors, fear, and uncertainty, we found understanding, support, and a sense of belonging. We were no longer apart from everyone else. We had found our people.

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 consult your physician or another qualified healthcare 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.