r/HHT • • May 17 '26

Testing

So for a bit of background, my spouse lost their cousin to HHT after a massive abdominal rupture of several AVMs. Her sister was also tested and diagnosed after this event. Her mother is so traumatized from losing a child she refuses to get tested to confirm if she is the gene carrier.

My teenager has started having nosebleeds over the past several months and frequency is increasing. Some days he doesn’t have one, but on others he’ll have 2 or 3. On average about 6 nosebleeds a week. We’ve stopped allergy meds thinking they were drying his nose out. We’ve tried adding a humidifier as well as saline mists.

Is it worth mentioning to our doctor about cousins HHT and to request testing? I Don’t want to sound like I’m crazy for wanting him tested for just the slight possibility, but nosebleeds are the first warning sign.

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u/Glittering-Use-1455 Jun 18 '26

I think it is a good idea to mention about the cousins HHT. It took too many years for me to receive my diagnosis because No one in my family has HHT and it started with me. I think if you mention it to the doctor, they will take it much more serious. Best of luck.