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High Factor VIII (8) Blood Clotting Disorder and its Impacts on life
Blood Cancers & Disorders | Last Active: Sep 10 9:49am | Replies (133)Comment receiving replies
@crackerjack ask your dr which tests and perhaps your daughters hematologist could advise also which ones based upon her condition. There are a bunch of different ones besides Factor VIII and Factor V. I would think they'd want to run the whole panel. I have no idea if your insurance will pay or not, you'd have to check with them. Yes, I think my family doesn't want the tests due to costs, I think my mom doesn't want to know as she'd feel guilty (I understand that some as a mother myself, but Id rather my kids know to help keep them safe).
Information is indeed sparse for Factor VIII. I have found some additional resources and also another group like this on another site as well https://www.stoptheclot.org/.
I hope your daughter is ok. Sometimes we feel so helpless and it's hard. Please keep us posted.
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@heidi2020 Thank you for the info and the link. I'm like you I'll do what I have to to warn, protect and heal my child. Helpless and pretty much useless is how I feel right now. I'm actually disabled myself, but was an RN for 25+ years.
This is something she has battled since she was diagnosed at age 9, (she has severe crohn's disease from her throat to her rectum and the doctors all say it is the worst case they've ever seen), and this last severe flare (that began a year ago), has contributed to all of this. Her being so ill and in so much pain and deteriorating so quickly, us not having all the answers because there are so many things going on inside her little body right now, treatments being hit and miss some making her feel better, some making her feel worse, and me, personally, not knowing how to medically help her get well, is all just horrible.
Right now I'm relying on tons of prayers, and more prayers that the specialists have the knowledge that will help her get well again, get and keep her in remission, so she can do all the things she's suppose to be doing. We want our babies to be well, and we will do anything we have to get and keep them well. Thank you again, hun. I hope you have a wonderful rest of your night.