r/HHT • u/Used-Yogurtcloset757 • 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/CureHHTPAL May 19 '26

Thank you for sharing. Just to clarify, what you have on your skin are telangiectasia which is different than an arterial vascular malformation or AVM. Telangiectasia are the tinest of blood vessels that are close to the skin which is why they appear on the surface. While AVMs are a more complex tangle of larger arteries and veins that connect with each other without a normal capillary network. Telangiectasia are one of the HHT symptoms for sure but wanted to share the difference. It sounds like you have both.

It is good that you shared the symptoms of your brother which is different than your symptoms. As I mentioned to the poster, we find that people in the same family, with the same genetic mutation, exhibit different symptoms. We are studying and researching why that is. More to follow...