Meeting another ‘HemoWife’ was surprising and enlightening

Last month, I had the pleasure of meeting another “HemoWife” at an event organized by the hemophilia organization that my husband, Jared, is involved with.

Her name is Anne, and she’s married to Jundee, who has severe hemophilia A. She and I had a quick chat, during which she shared snippets of her life and marriage.

A ‘soap opera romance’

“Ours was a soap opera romance,” Anne said with a laugh.

She’s known Jundee since her elementary school years, as they went to the same church in their rural hometown. He was five years older than her.

For the longest time, she saw him as a big brother. Never in her wildest dreams did she think that Jundee would notice her — much less that they’d end up together.

Often bullied in her schoolgirl days, Anne never thought she’d find a partner, until one day, when she was in high school, Jundee confessed that he had dreamed about her. In this dream, they were married and had two kids. This confession was what sparked their romance.

After Anne finished school, the pair got married. True to Jundee’s vision, they had two children — a girl and a boy.

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Not all sunshine and roses

But this dreamy partnership wasn’t all sunshine and roses. There were hurdles to overcome, too.

At first, some people disapproved of their relationship, believing it wouldn’t be right for Anne to marry a “sick guy.” Some even tried to stop her.

But she stood her ground and continued to take care of her husband. In her heart of hearts, she felt she’d made the right decision.

“Jundee always believed in me no matter what,” she explained. “He supported and encouraged me in every endeavor. I never thought I was smart enough to pass the teacher licensure exam, but he urged me, and here I am now.”

Undiagnosed hemophilia

Jundee was known as the sick guy at their church. Almost every time he came in, he’d have some form of injury or limp. He was a talented musician, though. Since he often had to stay home due to injuries, he spent much of his time learning to play instruments.

Back then, no one knew that he had hemophilia — not his friends, not even his own family. The rural doctors he’d been to suspected that he might have either leukemia or anemia, based on his bruises and frequent injuries. No one ever thought to run tests.

After Jundee and Anne got married, they decided to move to Metro Manila here in the Philippines for better work opportunities. Following the advice of his church mentors, Jundee focused on a singular craft as a hairstylist and opened his own shop. Meanwhile, Anne was studying hard for her licensure exam and eventually became a public school teacher.

It was only then that Jundee managed to get diagnosed with hemophilia and treated with factor VIII infusions. Unfortunately, his joints were already severely damaged from frequent untreated bleeds. Today, he walks with a permanent limp.

Jundee’s diagnosis story is not unique. Because hemophilia is so rare, especially in the more rural parts of my country, medical providers have a hard time diagnosing it. Even Jared, who was born in the metropolitan region, was diagnosed with various other conditions — including cancer and tuberculosis in the brain — before finding a hematologist who managed to conduct the right tests and conclude that he had hemophilia.

A touching experience

Hearing Anne’s story was a touching and humbling experience. I don’t often meet fellow hemophiliacs’ wives, since most of the organization’s members are parents of young kids with the bleeding disorder.

While HemoMoms and HemoWives certainly share some common experiences and struggles, such as sourcing medication and finding doctors, there are also some key differences between caring for a child and caring for an adult. For example, while children need safety and guidance, adults often simply require reassurance, security, and fulfillment.

I hope I’ll get to trade stories with more HemoWives and HemoGirlfriends someday. Hopefully our organization will allow us to form a sisterhood so that we can support one another, especially in times of struggle. Since hemophilia is still rare and often unheard of, it can be hard to find people who understand the unique phenomenon of being married to someone so rare.

Who else do we have but one another?

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.