Friday, March 3, 2017

New Developments In My Hemophilia Story...

 (me and my favorite little bleeder :) )

Imagine living your whole life with a genetic disorder you never knew you had. In fact, for most of your life it was believed that women couldn't even have this disorder, so there's really no way you could have it...

About 5 years ago, I first shared my hemophilia story. You can read about that HERE

Well in May 2016, my story changed. I went from simply being a carrier of hemophilia to actually HAVING hemophilia.

 If you don't know, hemophilia is a genetic bleeding disorder. People with hemophilia don't bleed more, they just bleed longer. I grew up around it because my dad has it. He would get nasty bruises, called hemotomas, if he had a fall or bumped into something hard. Once he was jumping on the trampoline (on his knees) with my cousin and I. He did some yard work and later that day his knee was swollen (filled with blood) to the size of a cantalope.

Until recently, my dad didn't really manage his hemophilia well. (It's true dad, don't try and argue! ;) ) But thanks to my adorable son, we got him to come to clinic with us for the first time in his life!

But back to ME :)

So back in May 2016, we went to my son Ben's clinic and decided we would have his levels retested because they seemed strange compared to what my dad's levels are. Typically factor (blood clotting factors) levels within a family are all pretty similar. At the same time, we decided to have myself and baby Dash tested as well. Dash, we just simply didn't know if he had inherited my defective X gene or got the good one. For me, we just wanted to see what my levels were since I tend to bruise.

Well when the results came back, sure enough, I only have 45% of factor IX (9) levels. Anything under 60% is considered to be hemophilia.

So there I had it, at 29 years old and after carrying and birthing 4 children, I was told that I have hemophilia.

We have been blessed that both my son and I are pretty mild. Even though his levels put him in the 'moderate' category he has had never required an infusion to stop bleeding but he has gotten some ugly goose eggs.

Like a couple days before the first day of preschool lol

This was the bump that promoted us to find a hematologist after our move. We went to clinic a little while after this.

For me, I have always seemed to have unexplained bruises on my legs and hips.  Here's one I noticed a few weeks ago on the back of my thigh. I don't remember what I bumped it on.

As far as other woman things, I've never noticed that to be an issue. Not super heavy. The only time my hemophilia may have come into play was with the birth of my daughter (#3 and my first natural delivery). The doctor did have to administer something for bleeding when she was born, but as I've told my hematologist, the OB was a in a hurry to get back to the office (I came in right before 8am) so he tugged a bit on the placenta. No clue if that had anything to do with it or what. But overall, life has been pretty normal.

We are fortunate, some people with hemophilia require regular infusions. Some even need a port directly into their body so they don't have to find a vein every time. There have been some really great medical advances for hemophilia, just in my lifetime and I am grateful that my son's quality of life will not be diminished.

March is Bleeding Disorders Awareness Month. You can go to the Hemophilia Federation of American website to learn more, get involved, or donate.

Thanks for coming by and reading my update! Follow me on any of these platforms for more updates and upcoming projects! I've got some home decor projects, kid's sewing tutorial, and some product reviews coming up that you don't want to miss!
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