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HPS Information, Please!!!

Last post 01-28-2009 4:02 PM by Jathan. 4 replies.
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  • 01-27-2009 8:30 PM

    • Jathan
    • Top 25 Contributor
    • Joined on 05-09-2008
    • Posts 403
    • Points 6,615

    HPS Information, Please!!!

    Hello!  I am sure that my son has OCA1 based on genetic testing.  We are not comletely sure if it OCA1A or OCA1B.  We have had varying opinions on this.  My question is this.....

    Should we have Jathan tested for HPS, even though it is confirmed that he has OCA1.  Is it possible that he would also carry the HPS gene?  I know from my own personal experience that it is possible to carry or posess more than one type of OCA genes.  Genetics fascinates me and I am not sure that it is possible that I will ever understand it.

    Jathan will be having Strabismus surgery very soon and this is a very important matter to us.

    Thanks for your help,

    Vickie

    (mom to Alexis & Jathan)

    Filed under:
    • Post Points: 50
  • 01-27-2009 9:05 PM In reply to

    • MrsChrisK
    • Top 100 Contributor
    • Joined on 07-25-2006
    • NC, USA
    • Posts 84
    • Points 1,240

    Re: HPS Information, Please!!!

     Yes - get him tested.  It is free to do.  Get the blood draw, send it to Dr. White in MN and he will let you know of the results.  Don't let just anyone test.  Have Dr. White do it!!!  If Alexis has albinism as well, I"d get her tested too.    Another reason to get the testing - we were getting small life insurance policies for the kids.  They tried to deny them because of the 'chance' of having HPS with the Albinism.  I had Dr. White fax me the results and sent it to the insurance company.  Now they are covered.  

    Chris K
    Indian Trail, NC
    Proud retired military wife and happy mom to TomAnAn and EliQing - both from China and both have albinism.
    • Post Points: 5
  • 01-27-2009 9:57 PM In reply to

    • Kelli
    • Top 50 Contributor
    • Joined on 02-11-2007
    • South Dakota
    • Posts 203
    • Points 2,840

    Re: HPS Information, Please!!!

    Vickie,

    I would get him tested just in case.  I wouldn't want to worry about something going wrong with his surgery because of HPS.  It's free and easy to do (in most cases).  I got Ryker tested and I just feel that's it's one less thing to worry about!  I think Donna at HPS would also recommend it but you can email her to get her thoughts.

    I wish I was into genetics as much as you.  It seems to just confuse me :)

    Kelli


    • Post Points: 5
  • 01-27-2009 10:39 PM In reply to

    • MomInKS
    • Top 25 Contributor
    • Joined on 07-13-2006
    • Kansas
    • Posts 270
    • Points 5,530

    Re: HPS Information, Please!!!

     Vickie,

     

    Email Heather Kirkwood: hkdawn@yahoo.com  She is on the board of the HPS Network.  I know her personally...she lives her in the KC area.   She can get you all the information you need for the testing.  

     Smile

    Mashawna

    • Post Points: 20
  • 01-28-2009 4:02 PM In reply to

    • Jathan
    • Top 25 Contributor
    • Joined on 05-09-2008
    • Posts 403
    • Points 6,615

    Re: HPS Information, Please!!!

    Thanks for the responses.  I am going to see if I can find a facility to drawl the blood.  I will let you know how it goes.

    Thanks Again!

    • Post Points: 5
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