Wednesday, May 7, 2014

Hemophilia is not Fair!

I could not believe what one man said to me when he inquired about my son's hemophilia. He said me that "I should not be so overprotective and that I should let him  enjoy life without him having to endure those infusions so muchthat makes him feel like he is walking on egg shells." I thought to myself "no you did not say that to me!" I replied well "do you think Hemophilia is fair? Do you think that me not giving him factor is fair to him or even make it fair for him to do what other normal children take for granted? needless to say I did walk  away feeling very angry and my energy felt drained.

 I have seen these same comments to many other parents in groups and even on their social network pages. I'm thinking these clotters don't get it do they?! HEMOPHILIA IS NOT FAIR! I actually read a few weeks ago on a friend's facebook page this comment "I'm glad that he doesn't walk on eggshells and live the "padded" life that some doctors would recommend for a hemophiliac. I can't imagine a bigger disappointment than living a sheltered life and one day dying without even a scar to prove that I had a good time while I was here." Now while some of that statement might be partly true for most people the fact is a child with  hemophilia makes it unfair for them to even compete with normal clotters. And not to mention scars are not overly desired by most people.That is why we give them factor treatments 2-3 times a week so that it makes it fair for them to play like normal clotters especially encourage boys to be just boys. So by-Gd  if he or she gets hurt and not get scarred (Gd forbid tuff tuff) at least it would be because they are being children and enjoying their life to the fullest not because they have a bleeding disorder!

Regular physical exercise is important to everyone’s health.  People who have bleeding disorders should talk to the doctors and nurses at their Hemophilia Treatment Center (HTC) about which sports and activities are appropriate for them, but I have yet to see where Hemophiliacs not play sports it all depends on the family and the child's choices.  People with mild disorders may not have to avoid any activities.  Others may have to stay away from rough sports like football and hockey. Believe me there are plenty of hemophiliac that do play hockey and Football.  Some activities like swimming, walking, and golf are okay for everyone.  But I want to empower my son to just be normal and be on a even keel with normal clotters so I factor my son  up so that when he does get hurt at least it is because he is tasting life as a normal boy not because he has Hemophilia. That is why we chose not to get a port that would disable him giving himself his own treatment, but to teach him to infuse himself so he feel in control of hemophilia not let hemophilia control him. Talk about enjoying life to the fullest.  The standard treatment of hemophilia today is factor replacement by intravenous infusion helps hemophiliacs to enjoy a normal life. Am I  a overprotective mother? Sure what mother wouldn't be, but at least I can breathe and let him be himself and have fun without so much worry within himself.

I'm writing this blog because I'm concerned that there are parents out there that would listen to uneducated clotters who make mishuga comments like that. Then in turn chose not infuse their child because they feel they are somehow neglecting their child's joy in life. Not giving enough factor is neglect and hurts the child more than if he was given factor often. Whats a few needle pokes a week? verses a lifetime of feeling empowered and can achieve normal play. Heck get a port if need be. But no parent/s should never feel that kind of pressure from someone who clots normal and have no idea what they are even talking about. Well I hope this help make it easier for clotters to get it. HEMOPHILIA IS NOT FAIR, but we can and do have a way to make it easier and fair for our children to enjoy life to the fullest. Giving them factor is not overprotection it's playing fair with ALL You Clotters our there!