NOAH AOC

Hi,

I would suggest you call the NOAH main number 800 473-2310.  Explain that you have new diagnosis for HPS and ask to be put in contact with Donna Appeal.  She is the president of the HPS Network and I am sure she can help answer these questions for you.

You can also take a look at the HPS Network site.
 

Hello there!

My name is Heather and I also have HPS. I'm 33, work as a journalist, and live in the Kansas City area. I'm also the VP of the HPS Network. Yes, calling Donna and getting registered with the Network would be a good first step. That way you're on the mailing list for any updates etc.

A medic alert bracelet is also a good idea. Heaven forbid if something should happen, HPS won't show up on the standard battery of bleeding tests in the ER, so you'll want the doctors to know ASAP what's up. The good news is that if they know why the bleeding won't stop, they can fairly easily treat it. I've had major surgeries and no bleeding problems - but I was treated before surgery to prevent them.

We also have a yahoo group for parents of kids with HPS. It's not always very chatty, but if you'd like to join us send me an e-mail at: hkdawn@yahoo.com. I'd be glad to add you.

Heather's very right you should get a hod of Donna and the rest of the HPS Network. I haven't been tested for it yet because I'm a big old chicken. I'm Shawn one of the people on the HPS Group and am afraid of being tested and I'm a 36 almost 37 year old man. But you know what I don't let crohn's stop me from doing anything. You're daughter sounds like a fighter she can lick this darn thing she's young enough to.

cheers

dragnfly50