The challenges of treatment when you’re a team’s first hemophilia case
When medical providers don’t often see hemophilia, caution naturally increases
During my husband Jared’s recent hospitalization, I heard one particular sentence more times than I can count: “We’ll wait for Doc’s approval.”
Jared was admitted for a burn on his hand, an injury that, on its own, often follows a fairly standard treatment path. But because he lives with hemophilia, his care quickly became more complicated than a typical burn case might be. After the blisters had popped, his hand was swollen and covered in dried blood closely resembling necrotic tissue. Out of caution, his surgeon didn’t want to take risks, concerned that this could signal deeper damage.
Even Jared’s father, a dermatologist at the same hospital, took a step back. He had a simpler, more practical view of the wound, but deferred to the surgical team rather than remove tissue that looked like necrotic eschar. What followed was a five-day hospital stay for an escharotomy — a procedure that required multiple clearances, a unit of blood on standby (so difficult to obtain during the holiday season), and several days of observation afterward.
Throughout the waiting period before the surgery, time seemed to stretch. Jared was in pain due to the nerve damage and built-up pressure in his hand. The clock kept moving. And with every delay, it became clear that this wasn’t a single decision we were waiting on. It marked the beginning of a lengthy approval process.
Even after the procedure, he was still left with some old skin, which, according to the surgeon, would simply slough off in time. “There are many ways to skin a cat,” the surgeon said as he taught us how to wrap Jared’s fingers in saline-soaked gauze, which would eventually lift all remaining old skin in a process that wasn’t only time-consuming but also far from painless. He didn’t want to risk a prolonged bleed during surgery, even if it was external.
When caution slows everything down
This was Jared’s first extended hospitalization in the 11 years we’ve been together. Despite living with hemophilia, he hasn’t often needed inpatient care. That history made one thing clear early on: He would almost always be his doctors’ first case of hemophilia.
When providers don’t often see hemophilia, caution naturally increases. More tests are ordered. More specialists are consulted. One approval depends on another. As soon as one hurdle is cleared, another appears in front of you.
What an HTC changes
A hemophilia treatment center (HTC) doesn’t just treat hemophilia. It puts everything else into context through a hemophilia lens.
HTCs are familiar with factor coverage protocols. They’re comfortable saying, “Yes, proceed — with factor on board.” That combination of protocol and permission matters.
Without it, hemophilia can feel like a veto instead of a variable. Providers know there’s a bleeding risk, but without hemophilia-specific experience to guide them, caution can slowly turn into delay. And delay is never neutral.
On paper, the logic seems straightforward. Hemophilia involves a bleeding risk. Burns can bleed. Therefore, do less.
But lived experience tells a more nuanced story. With appropriate factor support, bleeding risk is often manageable. The danger isn’t bleeding alone. It’s also what can happen when care becomes overly cautious — delayed procedures, prolonged hospital stays, and mounting physical, emotional, and financial strain.
Burn care is already complex. Adding hemophilia without specialized guidance adds friction at every step. Decisions that would normally be time-sensitive become harder to justify, even when delay carries its own risks.
The quiet labor of self-advocacy
There’s also an emotional layer that’s harder to name. When you’re a doctor’s first hemophilia case, you feel the weight of their uncertainty. Decisions slow. Questions multiply. And much of that uncertainty quietly transfers to the family.
A nurse friend of mine who is familiar with bleeding disorders, though not officially part of Jared’s care team, looked at his hand and told me it appeared typical for someone with hemophilia. Jared still had sensation in all his fingers, which reassured her that the hand wasn’t dead. She turned out to be mostly correct.
But unofficial reassurance doesn’t move hospital systems.
I don’t share this to criticize the doctors who cared for Jared. Their caution was understandable. Their concern was real. But this experience reminded me how much smoother care can be when hemophilia-specific knowledge is built into the system instead of added on in real time.
Hemophilia didn’t make this injury untreatable. It made the system hesitate. And for families navigating rare disease care, that hesitation can be just as exhausting as the condition itself.
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.
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