http://www.sweetaffliction.com/recentposts/lessons-on-prophylaxis/ Tue, 13 Jul 2010 13:15:37 -0700 hourly 1 http://wordpress.org/?v=3.0 http://www.sweetaffliction.com/recentposts/lessons-on-prophylaxis/comment-page-1/#comment-240 patti johnson Fri, 09 Apr 2010 00:36:21 +0000 http://www.sweetaffliction.com/?p=614#comment-240 Your article was very inspiring, I can relate to what you are saying. My father who is now 71 has severe factor VIII and all of the other issues from the late 70s and early 80s. He was born too soon as he states. There was no factor during the early years and that is why now he needs all his joints replaced. He now takes his medicine 3 times a week and if needed for a bleed an extra dose. However my sister who is now 35 is also a hemophiliac but not as severe as our father. She was not diagnosed until 5 years ago. She only needs factor for surgery so far. I am also a carrier. My entire family is very active in the Hemophilia Community for as long as I can remember. My parents starred in a movie titled Unexpected Life. It is a movie for Hemophiliacs over 50 years old. Hope everyone is well and make sure you listen to your doctor and caregiver. Your article was very inspiring, I can relate to what you are saying. My father who is now 71 has severe factor VIII and all of the other issues from the late 70s and early 80s. He was born too soon as he states. There was no factor during the early years and that is why now he needs all his joints replaced. He now takes his medicine 3 times a week and if needed for a bleed an extra dose. However my sister who is now 35 is also a hemophiliac but not as severe as our father. She was not diagnosed until 5 years ago. She only needs factor for surgery so far. I am also a carrier. My entire family is very active in the Hemophilia Community for as long as I can remember. My parents starred in a movie titled Unexpected Life. It is a movie for Hemophiliacs over 50 years old. Hope everyone is well and make sure you listen to your doctor and caregiver.

]]> http://www.sweetaffliction.com/recentposts/lessons-on-prophylaxis/comment-page-1/#comment-235 luke zankich Wed, 10 Mar 2010 00:53:28 +0000 http://www.sweetaffliction.com/?p=614#comment-235 I am 39 and severe. Obviously growing up severe without prophy has now caused a life time of pain and agony. So parents keep your kids juiced up, keep them exercising. I only have one fused ankle and very little other joint damage and I attribute this to a life time of staying fit which strengthens joints and 'hardens' muscles. and just recently started an every other day prophy dose. One thing I learned quickly was that the prophy dose was a little on the low side. I asked doctors and the truth came out that when they come up with a prophy dose they only are looking to keep you from spontaneous bleeds, so only up your factor level to around 40%. This I found for me was not enough to stop bleeds given my extremely athletic lifestyle. I got them to up my prophy dose to the 70% level. Now I work out hard. Yoga 3 days a week combined with hard weight lifting and lots of wrestling on the floor with kids, and no more bleeds. My advice is to do prophy and pay attention to the dose, it could be too low if you are actively hurting yourself all the time. :) I am 39 and severe. Obviously growing up severe without prophy has now caused a life time of pain and agony. So parents keep your kids juiced up, keep them exercising. I only have one fused ankle and very little other joint damage and I attribute this to a life time of staying fit which strengthens joints and ‘hardens’ muscles. and just recently started an every other day prophy dose. One thing I learned quickly was that the prophy dose was a little on the low side. I asked doctors and the truth came out that when they come up with a prophy dose they only are looking to keep you from spontaneous bleeds, so only up your factor level to around 40%. This I found for me was not enough to stop bleeds given my extremely athletic lifestyle. I got them to up my prophy dose to the 70% level. Now I work out hard. Yoga 3 days a week combined with hard weight lifting and lots of wrestling on the floor with kids, and no more bleeds. My advice is to do prophy and pay attention to the dose, it could be too low if you are actively hurting yourself all the time.

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