Wednesday, January 21, 2009

1st time hemophilia mom

Hey everyone. My name is Kathy and I live in NY. I am 23 years old and my son was born on Aug. 29, 2007. He was diagnosed with severe Hemophilia A a few days later. My life has been like a rollercoaster ride since he was born and I've felt very alone through all of this because there is no history of hemophilia in my family so I really knew nothing about it and am still learning. I'm glad to have found this site and look forward to exchanging stories.
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4 comments:

  1. sarasarasaraJanuary 22, 2009 at 5:34 PM

    Hi Kathy, my name is Sara and I also have a son with Hemophilia A. He was born on July 3, 2007 so our boys are close to the same age. I also have a 10 year-old son who does not have hemophilia, so this was also a surprise diagnosis to us. The past 18 months have been a definite rollercoaster of emotions, and I have felt alone more in that time than I ever have in my entire life. I am slowly getting better at the reality of it all.

    I keep a blog about what we have been through (http://www.imbruisednotbroken.blogspot.com). I hope that some of it can help you understand that there are other families going through the exact same emotions that you are, and that things will get better.

    Feel free to email me at sara.m.workman@gmail.com any time you'd like to chat or ask questions or just get some feelings off of your chest. It's definitely easier for me to share these feelings with someone who truly understands what its like rathar than someone who just tries to.

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  2. KathyJanuary 23, 2009 at 7:29 PM

    Hey Sara. It's nice to meet you. It's nice to finally have someone to talk to that REALLY understands. You'll have to help me with this whole profile thing cause I can't figure it out for some reason. I have to go now. Everything was fine until this morning. My son woke up and couldn't crawl or walk. His left knee is giving him problems again. I just don't understand. He's gotten his factor every 8 hours for the last 2 months. Spoke to the doctor and we're switching to every 4 hours for today. Hope to hear from you.

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  3. JaimeJanuary 24, 2009 at 5:15 AM

    Hi Kathy

    My name is Jaime and I too have a son with Severe Factor 8 deficiency. I'm so sorry that you are having these continued bleeds! Reece had several ankle bleeds at a little over age 1 and it took several treatments to get it under control. How is it going now?

    I met Sara online several months ago and having someone to talk to who can unnderstand what it's like first hand is really a comfort to me! Please feel free to contact me as well jcowan10@yahoo.com or check out our blog at www.thecowancrew.blogspot.com.

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  4. joanneJanuary 30, 2009 at 4:29 PM

    Hi Kathy,

    My son is only 4 months old and has not had factor yet they tell me that he is in honeymoon period. He has only had amicar once. My brother has sever hemophilia A the same thing as my son and when he was lil he had 2 ports. Now he is 24 years old and he gives himself factor every other day in his vein. My brother has target bleeds in his ankle and he has to walk with a cane now.I hope your son is ok i will keep him in my prays. There is gonna be a hemophilia walk in NYC in May you should join us. Its great you can meet people that are going through what you are.Do you live close to NY? Do you have a HTC? We use new york presb hospital they have a hemophilia clinic there they are great DR'S. It is great to talk on here we need other mothers who understand what you are going through. My son is still lil but i know what i am in for cause i saw what my brother went through. If you ever need anything please e-mail me at lilcutejoanne1@aol.com and i will give you my phone number and you can call me

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