Hereditary hemorrhagic telangiectasia

[anh06005, MSN, APRN, NP]

Just curious who these people need managed by? Had a pt come in who hasn't really been followed in a while. I called local Hem/Onc and they say they don't manage them. I have some other places I am going to try tomorrow but just curious if any of you guys have information!

Thanks!

[xoemmylouox, ASN, RN]

I guess I am surprised Hemoc isn't managing this. Did they have any suggestions on who else to refer to?

[anh06005, MSN, APRN, NP]

Well I finally got hemonc in a nearby city to accept him! It's tough to know who cause the problem isn't necessarily in the blood (from what I read) but rather the capillaries. I tried CV (they are cardioVASCULAR are they not??) and they thought derm possibly (I guess because of the hemangioma a they get??).

It took several phone calls and spelling the last word of the diagnosis but I think we are good now.

Anyway from those I have talked to it's a once in a career kind of patient to meet!

Too bad mine was only 5 months in!

[blossom856]

My mom was diagnosed with this disease and had to travel from Upstate NY to Connecticut to see a doctor who would treat her.

Robert I. White, MD > Diagnostic Radiology | Yale School of Medicine

[anh06005, MSN, APRN, NP]

So blossom what all do they monitor? It doesn't seem like there IS much to monitor aside from dealing with complications when they arise.

I have done some research on HHT after meeting this patient but it seems to be a bit confusing on where to send them (as mentioned above). Their issue is bleeding....but that's from vascular abnormalities....but a lot of the presentation deals with skin and mucus membranes. Sooooo hematology vs vascular vs derm vs ENT???? Then other guys when complications come up!!

Anyway just curious! At least the doc we found is going to research HHT more before the patient sees him! It's good to have someone willing to do the extra work.