NOAH AOC

Hi to everyone.

I've never been tested for HPS, but have often thought it might be a good idea due to some symptoms I've had, especially severe and heavy nosebleeds as a child.

I've been seeing a massage therapist for a while due to an accident I had in February. She's aware of HPS and asked me today if I'd ever been tested. She was also wondering, as now I am, if there are any symptoms such as soft tissue complications or brittle or easily breakable bones.

I'm also wondering if anyone knows if anyone is doing testing now in Canada. I had hoped to avoid going through having to go UPS through the States.

Anyway, thanks so much for info.

Julie

Hey Julie,

Wow - tell your massage therapist she or he gets the gold star for the day! My doctors never even know about HPS!

I think it might not be a bad idea to get tested. If you did have HPS, it's important to know it so you can try to prevent some of the complications and take advantage of some of the medical research to keep yourself healthy for a good long time. If you don't have it, then you'd know and you'd never have to worry.

Brittle bones are not part of HPS, although some of us have them because of long term steroid use to treat some of our HPS complications.

Soft tissue stuff would just be easy bruising.

Unfortunately, I'm not aware of anyone in Canada doing HPS testing. But, maybe you could get your doc to mail the sample for you - sometimes folks are able to pull that off.

If you want the info on testing to take to your doc, please e-mail me at hkdawn@yahoo.com.

Heather Kirkwood

VP and Director of Outreach, HPS Network.

Hi Heather,

I have four year old son and in the process of finding albinism type via DNA testing. We sent the blood samples to Colorado University and found out that he doesn't have type 1,2,3 or 4 albinism. So we are requesting them to test again, whether my son is HPS type? Hopefully they still have old samples, else we have to re-send the blood samples.

My question is, how do we find out HPS type albinism? Is DNA testing is the only way? Kindly enlighten us.

Regards.

Genetic testing for HPS is not conclusive because we know that we haven't yet found all of the genes that can cause HPS. Instead, the "gold standard" test right now is to view blood platelet cells under an electron microscope. If the cells lack dense bodies (little sacs of chemicals in the membrane of the cells that burst open when you're hurt to release the chemicals and help your blood clot) then the patient has HPS. The guy who does the test is at the University of Minnesota. The test is free, however, you've got to ship the blood to him which can be inconvenient and means paying for a FedEx or some sort of overnight service.

If you'd like to set up some testing, I'd call in to the HPS Network and Donna can help you get set up with Dr. White. The number is: 1 (800) 789-9HPS.