Hi kirrilee, it’s an interesting question you pose, thank you for raising it, as i have recently had some genetic tests done, as I have recently been diagnosed with a genetic condition called HHT see weblink… Hereditary haemorrhagic telangiectasia (HHT) - NHS
(I’m still waiting for the full details from these genetic tests).
What has been interesting for me is that I’ve had nose bleeds all my life, had ENT specialists investigate and cauterize my nose as a child, all to no avail.nose bleeds continued regardless.
At no point did any medic suggest a scan for AVMs/or any other abnormality that may be causing these regular nose bleeds.
As you will see from my profile I discovered that I had an AVM in my brain(occipital) when the AVM ruptured in 2012. 2 of the main elements of HHT are AVMs and nose bleeds .
2 days prior to my brain haemorrhage I had the most enormous nosebleed, for3 hours, which wouldn’t stop so I headed up to A&E. I was bleeding out of both nostrils and both my eyes.
At no point did any A&E medic suggest a scan for AVMs/or any other abnormality that may be causing these regular nose bleeds.
As I say, I’m still waiting for the genetic findings of my particular strain of the HHT faulty gene I have, so I can get the rest of the family tested too.
I would be very interested in hearing from others who may have similar experiences.
I’m also keen to make as many folks aware of the link between AVMs and the HHT condition, particularly with HHT being hereditary and therefore affecting the wider family greatly.
If I had known I had HHT I would have been screened and the AVM identified prior to it haemorrhaging. So i hope this post can save others unnecessary injury.
Having said all that, I have adjusted to my new brain injured lifestyle, and look forward to what God has In store for me, as He clearly hasn’t finished with me yet!
SmilerDi