Hemophilia - a rare inherited bleeding disorder that causes prolong bleeding and easy bruising.
Prophylaxis - (commonly shortened to prophy) Prevention of or protective treatment for disease.
I have two son's that have severe hemophilia A, Marques who is 8 and Laithan 18 mnths old. Marques has been on prophy since he was 16 mnths old. He fell out of my bed (what a heart break that was for me...I'll discuss in another post). Laithan just started prophy this March because he started having horrible spontaneous bleeds in his shoulder and hip.
So, three times a week I get my assembly line together so I can factor them up. Now, because of being on prophy I know I am avoiding them from being in horrible pain as well as improving thier long term health. I've seen the pain my Dad experienced from target joint bleeds and how it crippled him. I do not want that for my sons....therefore I am a PROPHYHOLIC - dependent upon regular infusion therapy to prevent and protect hemophilia from impacting my sons' life!
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| Marques listening in on Laithan and Layla |
God bless you and your household as you raise your wonderful sons. How important for parents to have good attitudes to deal with whatever comes our way. It sounds like you are doing a great job. Our daughter, Sarah, is doing "double prophy" now also. She and her husband have grown leaps and bounds in their knowledge of hemophilia and in the love for those affected by this desease. Keep up the good work, Nancy Fielden
ReplyDeleteThanks Nancy, My best to you, your daughter and her family!
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