What do I wish I would
have known at the beginning of our patient journey that I know now?
That it will be okay.
But seven years ago when we were at the HTC with our then
newborn baby boy waiting on a diagnosis I would’ve never thought that. Then
getting the hemophilia confirmation and a three day stay in the NICU…I would’ve
said, “no way”. As Jackson got older and my heart jumped to my throat with each
new milestone I realized that it IS going to be okay.
We now self-infuse and have been for a while. I’ve met with
local and state Congressmen to advocate for hemophilia. I’ve always had a voice
but it’s become louder and with specific purpose. If you would have said I
would be a mentor to newly diagnosed families I would have said, “You’re crazy”!
Or blogging for our hemophilia adventures or serving as a Board Member for our
local Chapter?! Say whaa?
This week I sat on a panel discussion for hemophilia with
our local chapter and HTC for newly diagnosed families. I was them not that
long ago. To sense their fears, concerns and knowing what the road ahead looks
like for them but knowing in the end they will ultimately be ok. Their family
unit will be stronger and they will be well equipped to speak their mind for
their sons who are not yet able to speak. It’s a journey I’ve come full circle
in and yet I’m still learning.
So if you are a newly diagnosed family or established family
with a bleeding disorder that needs some encouragement…It’ll be okay.
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| Captain Jackon |
Having haemophilia A this means that his body, his immune system, fights off the medicine – the infused factor VIII. The alternative clotting factors that we used to control bleeding were much less effective. His medical condition was heart broken. Despite our visit to several doctors his health wasn't getting better. He was subjected to different medications, by many doctors for treatment without the assurance of having a permanent cure. Having a son with hemophilia and then, the added challenge of an inhibitor, is not always easy. Suspicion that something wasn’t right began when he was 6 months old due to the heavy amount of bruising which started showing up all over his legs. As a parent, I would love to fix things and make everything better. Fortunately, there have been other positive alternative (Herbal Medicine) though few people doesn't know the challenges of living with hemophilia. If your child is having same problem, do not expose him/her to more danger, use a herbal remedy that is safe and effective. Contact him directly for more info with his email address: sharmash116@gmail.com
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