tag:blogger.com,1999:blog-7675463774029458309.post6727755979264741351..comments2023-04-15T02:46:34.695-05:00Comments on Infuzr: A Painful LifeAmber Lynnhttp://www.blogger.com/profile/14237656042128367587noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-7675463774029458309.post-43986379032653144292017-12-15T10:01:57.468-06:002017-12-15T10:01:57.468-06:00Thank you so much for these information. One of my...Thank you so much for these information. One of my friends were arthritis patient so I suggested her to <a href="https://stem-cells-therapy.com/" rel="nofollow">get stem cell therapy</a> which has become more popular than other treatments. And this treatment is in reasonable cost also.<br />jaqulinhttps://www.blogger.com/profile/09855085722402484691noreply@blogger.comtag:blogger.com,1999:blog-7675463774029458309.post-72158159695044630672014-02-20T18:35:50.214-06:002014-02-20T18:35:50.214-06:00Brad, I am a strong proponent of individual right...Brad, I am a strong proponent of individual rights and responsibilities, so I respect your right to have control over your medical treatment, and decide how and when you should be treated. However, I liken this with the decision to smoke. I would never want to infringe on someone's right to smoke... so long as they are not infringing on other people with their smoking. But there are serious health consequences to what you do. And just like smoking, those consequences are not immediately obvious. You have not given me enough of an idea about your age to say if you have had to deal with those consequences yet, so forgive me if I come across a little preachy. I am a little older, in my 50's now, so I didn't have the option of prophy when I was growing up. I was actually on the leading edge of the on demand home treatment program. Having factor on board before all those minor bumps that kids get means by far less hemorrhaging into joints and synovial membranes that keep joints functioning well. Damage to these areas is slow, and much of the damage is done by the body reabsorbing the blood that has swelled into these areas. At first, it acts like a little arthritis, not a big deal. But later in life, that arthritis becomes unbearable. I, like many hemophiliacs of my generation have had multiple joints replaced and fused because of this damage. I just hate to see others go through what we had to needlessly, when all that is necessary is to raise your factor level, even a little. I totally get that it is invasive, and cramps your style. But you won't believe how much bracing and walking aids will cramp your style later. <br /><br />"If I knew I was going to live this long, I'd have taken better care of myself." ~Attributed to Mickey Mantle, Eubie Blake, George Burns and Mark Twain (amongst others)Michael Birminghamhttps://www.blogger.com/profile/16636440403948308608noreply@blogger.comtag:blogger.com,1999:blog-7675463774029458309.post-89319282611511020142013-02-25T11:32:04.571-06:002013-02-25T11:32:04.571-06:00There will always be differing opinions and that&#...There will always be differing opinions and that's why I want Infuzr to be a place for people to share their own thoughts, feelings and experiences. These posts are not Infuzr's beliefs. They are ours (the contributors). Infuzr is just a platform for us to share them. I believe open discourse promotes growth. This post and the comments are a good example of two different views being respectfully expressed and discussed. This is what the community needs. Thank you, Brad and Lovee.Markhttp://www.infuzr.comnoreply@blogger.comtag:blogger.com,1999:blog-7675463774029458309.post-76118541043889759242013-02-21T06:13:40.361-06:002013-02-21T06:13:40.361-06:00Thank you for the comment. I agree with your conc...Thank you for the comment. I agree with your concept of the different generational views of prophy. However, by the time I was 5 years old my hematologist recommended prophy but my mother has always empowered me to make the decision. Remember, treating a persons hemophilia is extremely invasive and by treating prophylactic you are increasing that invasiveness. Educating your children on the pros and cons is important, but remember that they are the ones coping with the disorder.bradmyershttps://www.blogger.com/profile/12897765560329644010noreply@blogger.comtag:blogger.com,1999:blog-7675463774029458309.post-16113541195549997922013-02-21T00:19:54.981-06:002013-02-21T00:19:54.981-06:00Thanks for sharing your story. I'm glad that ...Thanks for sharing your story. I'm glad that you took control of your hemophilia and agree it is not a curse. As I read the title, "A Painful Life", as a mother I think I would have to advise my son to do otherwise. I'm starting to believe that each generation views prophy different. When you start prophy at a young age of 1, like both of my sons who have severe hemophilia A, then I feel like prophy is giving me/them the control. So, if they do infuse before they play sports or rough play with friends at a sleepover then they are decreasing their chances of hemophilia hindering their life. By them being on prophy I don't have to pray we will have a bleed free day, like I did prior to them getting on a prophy schedule. So I understand how you refuse to let hemophilia control you, but respectfully I want to teach them how being on prophy gives them the control. I definitely will have him read your story though!Lovee/ProhphyHolic Hemo Momhttp://www.prophyholic.comnoreply@blogger.com