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question about pulmonary fibrosis

Last post 11-06-2007 8:19 PM by tinkerkat. 1 replies.
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  • 11-03-2007 7:00 PM

    • mag
    • Not Ranked
    • Joined on 11-03-2007
    • Posts 1
    • Points 20

    question about pulmonary fibrosis

    Hello,

     Could you please tell me if all HPS patients have pulmonary fibrosis?  Also, do all HPS patients bruise easily?  Thank you very much.  My daughter may need to be tested for this and I am very concerned.

    • Post Points: 20
  • 11-06-2007 8:19 PM In reply to

    Re: question about pulmonary fibrosis

    Hi Mag,

    My name is Karen and I am one of the regional coordinators for the Hermansky Pudlak Syndrome Network, and I reside in NC.  To answer your question about bruising.  The answer is yes because of the bleeding disorder associated with HPS.  Now a little good news.....as for pulmonary fibrosis....it can be a symptom of the syndrome, however not all people with HPS develop this symptom.  More good news, the test for this disease is simple and free.  I would advise you to contact the HPS Network and talk with Donna Appell our president or someone working in the home office.  The number to the network is 1 800 789 9HPS.  I personally think every child who is born with albinism should be tested for HPS, even though it is rare.  I was misdiagnosed for 38 years, and it took my cousin's mother contacting me about her son for me to learn that there was such a disease.  I hope this info helps and if you would like to contact me off list my email address is till3604@bellsouth.net  

    • Post Points: 5
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