Hello everyone! My name is Frances
Rivera Pacheco and I have Factor V Deficiency - a bleeding disorder. Wow, that
sounds so curt. Let me try it again.
What’s up? My name is Frances Rivera
Pacheco and I have a bleeding disorder called Factor V Deficiency. Ok, that
sounds so informal. *Sigh* Let me try it one more time.
Hey guys! My name is Frances Rivera
Pacheco and I'm a 20-year-old college student who is obsessed with mozzarella
sticks, books, nachos, people's love life, pasta and dancing. I have many aspirations,
dreams and goals in my life and yet what the majority of the people that love
me focus on is how I plan to achieve all of these since I have a bleeding
disorder. (Yass - this is perfect!)
Maybe you know all about bleeding
disorders or maybe you don't know what a bleeding disorder is. If you are aware
of bleeding disorders and what they are (you go, Glen Coco!) - you may skip to
the next paragraph. If you are not, then sit down and let me teach you about it
:) According to Healthline, a bleeding disorder "is a condition
that affects the way your blood normally clots. When you get injured, your
blood normally begins to clot to prevent a massive loss of blood. Sometimes the
mechanism that causes the blood to clot fails, resulting in rapid or prolonged
bleeding. Bleeding disorders don’t always affect blood leaving the body.
There are many conditions that cause bleeding to occur under the skin or in the
brain." (For more information:
http://www.healthline.com/health/bleeding-disorders#Overview1). To recap all
those wonderfully long and boring words: a bleeding disorder affects the
clotting process. But what does this mean for those who have it? Basically we
have to be very cautious and prepared for any situation that may make us have a
bleed externally or internally. It can also be painful and torturous to us -
don't even get me started on my period. Don't worry tho! We have come to learn
to live with it and have fun!
Now you know what a bleeding
disorder is which means that in a few seconds you will get to learn about mine
specifically- Factor V Deficiency. According to Healthline, Factor V
deficiency, also known as Owren’s disease or Parahemophilia, "is a very
rare blood clotting disorder that results in slow or prolonged blood clotting
after an injury or surgery."(For more information check out this link:
http://www.healthline.com/health/factor-v-deficiency#Overview1) In short,
I have a very rare bleeding disorder, which in case you are wondering (or
are about to wonder) is usually found in 1 person out of a million. Yeah, talk
about being special.
Fortunately, there is someone else
in my family who has it and I don't feel so alone. However, she is younger than
me and its kind of hard for me to picture what life can be like in the future
since in all my 20 years I've never met anyone else (besides my family member)
who has it - that is, until I raised my hand at a hemophilia symposium this
weekend and I got an answer I wasn't expecting.
The "Powering Through
Florida" panel was being hosted by Patrick James Lynch (aka this really
attractive guy with severe hemophilia A who also happens to have his own mini
web-series on YouTube about Hemophilia that is hilarious! Check him out at:
https://www.youtube.com/watch?v=wgXLzu3cVto) with the purpose of inspiring us
to keep living our lives and to not limit ourselves or our possibilities in
life because of our health limitations. They also advocated for us to be
more involved with our Hemophilia communities since they were the ones that
would support and understand us better than any other community. Patrick, for
example, is an actor, writer and director who found his hemophilia community by
advocating to and for others about Hemophilia. Bobby Monohan talked about how
he recently found his hemophilia community when he decided to use social media
and hash tags to find them. Liliam Bervis, on the other hand, spoke about how
being the only woman with Von Willebran's disease back in the day in her
hemophilia community made her want to find more women like her. Out of the four
present in the panel, Allie Cashel was the only one who didn't have a bleeding
disorder. As a young woman with lime disease, Allie spoke about how when she
was younger she felt like an outcast since she didn't know others who had lime
disease and how finding stories for her book (You can learn more here:
http://sufferingthesilence.com/#sthash.wSHOYq8s.dpbs) on lime disease actually
helped her find a community she didn't know existed or that she needed.
Through the whole thing I keep thinking to myself
"These people have found their community and even though I love the whole
Hemophilia community, I don't always feel like I fit in. Then again, what
exactly am I doing about it ?" I realized right then and there that I HAD
to ask them for help and tips because if they had managed to find others like
them - so could I. I took a long time because my sister always says I ask too
many questions (What? I am very curious homosapien ok), but then she asked a
question and I felt entitled to finally ask mine. So I raised my hand and
before I knew it, Patrick is talking about how he is pretty sure he knows
another girl, who happens to be a blogger, with Factor V Deficiency and how he
will connect me with her. No joke, I wanted to cry. In fact, the best way to
describe this moment would be in Fresh Prince's words "Now, this is a
story all about how my life got flipped-turned upside
down." I mean, here I was asking a hypothetical question that
I've asked before expecting nothing but tips and instead I get an actual name
of someone who is like me. Plus she is also older than me, 32 to be exact!
Like, HOW FREAKING AMAZING AND COOL IS THAT?! Now all I have to wait for is to
see if she wants to meet and share stories and tears and laughs and even
cookies! In short - I am pretty damn happy right now!
I believe God makes everything happen for a reason.
Because here is the thing, you would think that by me being super outgoing and
a writer (meh, getting there really) I would have already found the way to find
another person with Factor V Deficiency. I admit however that the reason it
took me so long was because I had this fantasy notion of "they are
somewhere out in the world hidden from me and I shall find them - eventually
and unexpectedly" which is why I never put myself out there since I was
sure it would happen on its own. I mean it literally took me 20 years to ask
for help, yet in the end it did happen that way: "eventually and
unexpectedly" but that was because I finally put myself out there. Can you
imagine how long it would have taken me if I hadn't? The horror!
After finding out about this 32-year-old me, I began
reading some of the posts in her blog and I realized that I was missing the
opportunity of finding others like me. Who knows how many 1-in-a-million girls
and guys are out there wondering, "where in the world is my Factor V
Deficiency buddy?"
Don't worry guys! I know you are out there - in the
meantime, just know I'm right here :)
zozo
Frances aka Fez aka SuMajestad
No comments:
Post a Comment