Wednesday, December 1, 2010

World AIDS Day

So, today is world AIDS day! I think for most people it might not mean anything. For those in the Hemophilia Community world AIDS day brings up horrible memories. For me, I remember a family I met when I was living in Halifax, NS. The family that I had the pleasure of meeting had two sons that had severe factor 8 hemophilia. Both sons contracted the HIV virus through the tainted blood in the 1980's. The family was so devastated that they told everyone the boys died from severe bleeds when in fact it was AIDS. They didn't want people to know the truth. Sadly, for a lot of Hemophiliac families this story is very similar to their own. You see in the 1980's almost an entire generation of Hemophiliacs were injected with tainted products containing the HIV and Hepatitis C virus. World AIDS day makes me think of all the people we've lost to this horrible disease and it reminds me that the Hemophilia community is still at risk. Until all Hemophiliacs have a recombinant factor that contains no human blood product what so ever we are still at risk.
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8 comments:

  1. MahalingamDecember 2, 2010 at 5:55 AM

    yes. nobody can assure 100% protection as long as the product is made from blood. But in future, I expect genetically altered micro-organisms to produce the clotting proteins and extract recombinant factor from them, stopping the blood-borne diseases.

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  2. RyanneDecember 2, 2010 at 6:12 PM

    Yes That is my hope as well! I have severe factor 5 so there is no recombinant factor for my specific factor but I am hoping someday all bleeding disorders will have a recombinant product!!

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  3. Mahalingam.P.RDecember 3, 2010 at 5:57 AM

    so, what medicine do you use? any alternatives?

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  4. RyanneDecember 3, 2010 at 2:24 PM

    I take Fresh Frozen Plasma normally about 4 units for a bleed.

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  5. Mahalingam.P.RDecember 4, 2010 at 6:01 AM

    oh... can't any alternate factor concentrate be used for factor 5? like Factor 7 can be used for Factor 8 inhibitors.

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  6. RyanneDecember 4, 2010 at 4:57 PM

    no there is no concentrate or recombinant factor for factor 5!! Sadly I stil have to use plasma!!

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  7. Mahalingam.P.RDecember 5, 2010 at 7:11 AM

    plasma is effective enough?

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  8. RyanneDecember 5, 2010 at 8:59 AM

    Yes! its the only the only treatment I've ever used! there are no drug companies that have developed a factor 5 product!

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