NOAH AOC

Hey Una,

I am so happy to hear your good news.  I also know that there are some people with a lot of the same symptoms as us with HPS, and yet they have some dense bodies on their platelets instead of having no dense bodies.  It is rather baffling at times for sure.  Hopefully since the daughter has the elevated platelet count, they'll be able to put her puzzle together, and hopfully get you some answers all the way around.  I would truly be so frustrated.

Take care, Karen Tillman Regional Coordinator, Mid Atlantic USA Hermansky Pudlak Syndrome Network Inc. NY Home Office 1 800 789 9477, my email till3604@bellsouth.net My blog www.myspace.com/karenshpskorner My YouTube www.YouTube.com/tommytillman

Oh una that is so good to hear that your children doesn't have HPS... GOD works great miracles i tell ya...

Thank you

Hi, my name is Nicki and am still very new and naive to the world of Albinism. I have a question and hope someone can answer me. I have a foster baby 11 weeks old who was just diognosed with OCA.  All the threads I have read have had people talking about OA and getting tested for HPS. My question is can infants with OCA have HPS also? or is it just OA that can have HPS?  Sorry this may be a stupid question to most, but as I said I am very naive and need to learn.

Hi all,

I am an Australia but want you to know that you are not alone when it comes to doctors not knowing how to test for HPS. I had my baby, who has OCA at the hospital who was sick for three months with a chest, mucus, coughing problem, and they carried out a full blood test on him. The blood work came back all normal, so they tell me that he doesn't have HPS. I had to tell them even the paediatrician that you can not test for HPS doing the normal blood works. I explained that the blood platelets have to be sent to the States to be tested. They were very shocked to hear this and is referring me for Genetic cancelling for Ricky to be tested, as I requested.

Nicki.

HI Nicki,

Sorry I am just reading your questions..  Any child with OCA or OA can have hps... My Son tested negative for it ( praise GOD) I actually had his blood drawn up with consent from his pediatrician and over nighted it to minnesota to Dr white I believe is his name...within minutes of them recieving the blood and testing it they called and told me the results and also emailed them to me to show my sons genetist...  Your right on telling them about the blood work.. Even my childs pediatrician didnt know what i was telling him but I printed up the paper work and brought it as proof and they agreed and ordered the blood sample...  I hope you get answers from the genetists... I am still fighting ours to draw blood on bryson to prove for once and for all that he does have it... good luck with everything and I wish lil ricky and your family the best

Christine