For much of her life with hereditary hemorrhagic telangiectasia (HHT), Carol had to be her own advocate. She had to explain the condition. She had to ask for what she knew her body needed. She had to insist, while exhausted, bleeding, and severely anemic, that her symptoms were not routine and her care could not be routine either.

I need you to keep me alive.

Carol, to one of her physicians

She was in her late thirties then, a wife, a mother of four, and working full-time in a demanding job that had her travelling often. From the outside she was building a career and raising a family with the kind of momentum that does not leave much room for collapse.

HHT was there the whole time. What began as occasional bleeding became hemorrhages. There were years of emergency room visits, surgeries, severe anemia, and frequent transfusions, with stretches where she needed blood as often as twice a week. There were ambulance rides and procedures. On one cross-country flight she bled so badly that the pilot considered an emergency landing.

What powering through actually costs

“I powered through,” Carol says, which sounds straightforward until you understand what it required. It meant eight hours in the emergency room receiving blood, and then carrying on with the day. It meant managing a serious vascular disorder while working, parenting, and travelling.

At work she kept the diagnosis private, mentioning only that she had nosebleeds and occasionally needed cautery. She did not want HHT to define her career or change how colleagues saw her. When she was offered a long overseas assignment, she turned it down, privately weighing the risk of limited access to safe blood, and never explaining the real reason.

That is one of the costs of HHT that never appears in a chart: the calculations people make in silence, and the opportunities they quietly decline.

What she wants to change

Carol’s position is simple. No patient should have to know more about HHT than the medical team treating them. When a person arrives in an emergency room bleeding, the expertise should already be in the room.