Coming Soon: World Hemophilia Day

This year, on April 17th, people all over the world will be celebrating World Hemophilia Day! The theme for WHD 2012 is "Closing the Gap".

To be perfectly honest, I had not heard of WHD before this year. But a few months ago I was browsing through some recent articles on the NHF website and I saw the date. Needless to say, I was very pleasantly surprised! WHD is a day to raise awareness for men and women around the world living with chronic bleeding disorders. On this day, to participate and show your support, wear RED! 

I've heard that a lot of people are attending Hemophilia Walks or going to a dinner/event that their treatment center is putting on. Currently, as I am switching hometowns for college (and no longer under pediatrics!), I am in between treatment centers. So to my disappointment I will not be able to participate in any of those activities. :( But I will next year for sure! :) 

The World Hemophilia Federation (WHF) website lists several activities to put on during WHD here! There's still time to organize something! 

To raise awareness, I created a WHD event on Facebook and have since then shared many articles and informative videos on my Facebook wall to help my friends and family understand how important awareness is! 

So what will you do on World Hemophilia Day? Sport a red outfit? Create an event? Organize an awareness booth? Share your ideas below and include pictures if you'd like! :) 

Have a great week!

<3,

Jamie

"Let's Talk."

"Talking to people, one-on-one, is an extremely powerful form of communication, because it is personal and genuine. If many people with VWD and members of their families make a concious effort to speak up, it could have a big impact on educating the public." ~Renee Paper "A Guide to Living with von Willebrand Disease"

We've all had to talk about our bleeding disorder at one point. Sometimes it's voluntary and you're open to sharing, and other times it's just downright embarrassing and you give a 5-second explanation before changing the subject.

Personally, I've always been pretty open about my bleeding disorder. When I was little, I told most of my friends about it, and it was no big deal. But, as we get older, we all start becoming a little more self-conscious. In fact, the last time I was at the women's retreat that I go to, some of the teen girls were talking about how to tell their friends about their bleeding disorder. I mentioned that all my friends knew, and dealing with VWD was quite a bit simpler because of it!

But...I'm not always so unashamedly open. :P

For example: I was recently at a meeting with all the teens I'm graduating high school with this May. After the meeting ended we all sat around and talked about what we could do together as a group. And what was the first thing everyone wanted to do? Paintball. I sat there and thought: Great. Now I won't even get to hang out with everyone!. One of the guys in the group must have noticed I wasn't jumping on board because he looked at me and asked: "What's wrong?". The majority of the group stopped talking and looked at me. I kind of sank back in my chair a little and said: "Well...I...I'm not exactly allowed to go paint-balling." (BTW--that was a STUPID answer. I see that now. :]) By the time I finished dishing out that little tidbit of information the rest of the group was looking at me. The guy that had asked me in the first place got the really weird, disbelieving look on his face and said: "What? Why not?". I pulled at my jeans and did my best not to blush (a pretty failed attempt): "Well, I have a bleeding disorder. And I'm not really supposed to do stuff like paintball.". The guy looked super embarrassed and said: "Oh my gosh, I'm sorry! Ok, never mind. We'll do something that everyone can do. Sorry."

There were so many things wrong with the way I handled that situation. First, I was embarrassed about the fact I had a bleeding disorder, and second, I did absolutely nothing to explain why I couldn't play paintball. I had a great opportunity to educate someone about a rare bleeding disorder and instead I stayed quiet because I felt weird. Looking back, even late that same afternoon, I felt so bad. Where was that courage and self-confidence I'd just been talking about? One word: FAIL.

Later on at the meeting after everyone had left, the same guy approached me and asked: "So, like, what is that?" I knew he was referring to the bleeding disorder, and, still feeling embarrassed (I could kick myself for this), I said: "Oh, well, I bruise easily. So...paintball is kind of a 'no-no'."

I could've said: "Well it means that my blood doesn't clot right, so it takes a long time for me to stop bleeding." or "It's called von Willebrand's Disease and it means my blood doesn't clot right so I bleed for a long time." But what did I say? "I bruise easily." Ugh. What kind of an explanation is that?

Anyway, I tell this story because I know exactly how it feels to be embarrassed of your bleeding disorder. I know the term "chronic disorder" sounds creepy and weird, and I know sometimes it's hard to see yourself as perfect the way you are.

I should've handled that whole conversation in a mature, self-confident manner. But I let my nerves get the best of me. :) Will it happen again? Hopefully not! I'll try educating myself even more and instead of waiting to be asked about my bleeding disorder, I'll be open about it from the beginning!

Coming up, I'll have even more posts on how to talk about your bleeding disorder with your friends! And, as always, I'd love to hear your stories and techniques and advice! Feel free to leave a comment below and share!

Much love to all of you!

<3, Jamie

"I've Got This."

There are two things that can make living with a bleeding disorder extremely difficult: 1) living life undiagnosed and having to undergo numerous hospital visits or heavy periods without knowing why, and 2) being scared and unprepared.

As a young lady who has lived with Von Willebrand's Disease for all seventeen years of her life, I understand the importance of being brave and being ready. Too many times girls let their bleeding disorders (even if they're mild) run their lives. That's not how it's supposed to go! You control your bleeding disorder instead of it controlling you. Fear of being weird or looked upon as an outcast because of your chronic illness will result in nothing but self pity and emptiness. We live different and sometimes more frustrating lives than the average teen girl, but it makes us stronger and braver!

What are some bleeding disorder issues that cause you to panic when you think about them? How do you handle situations when you need to self-administer medical attention? Are you constantly worrying that someone will find out about your bleeding disorder? If so, then it's time you realized the unique-ness of your disorder and how you can keep it under control.

"I've got this."


That's my motto when dealing with my disorder. :) If something goes wrong (and you don't need to be hospitalized or seen by a doctor/hematologist) then just take a deep breath, calm down and say, "Yeah, I've got this.".

My bleeding disorder isn't severe, I've only been hospitalized once and (so far) have dealt with all injuries on my own with a little help from my mom and dad. I have a moderate-mild type of VWD, but there are still a few things that I need to take a hold of and deal with. Things that all girls with bleeding disorders must learn to cope with.

But what if you're scared to deal with it? Or worried that you can't? What if something goes horribly wrong and you bleed all over yourself in front of everyone?!

Relax. :) You've got this, remember?

I'm going to give a few examples of how I've taken control of my bleeding disorder and moved from letting my parent's handle it to taking care of it myself.

Periods. The most dreaded and probably worst part of having a bleeding disorder if you're a girl! What do you do?

How I Handle It:
*I take medication consistently at the same time every day to prevent periods
*I make sure that if I do have a breakthrough bleed I have medicine to take that lessens the bleeding (Amicar or Lysteda)
*I always, always, ALWAYS keep at least 5-6 pads in my purse, backpack and suitcase just in case I start bleeding
*I journal my periods so if my Hematologist has any questions I can show them the charts
*I keep a jacket with me in my backpack in case I stain my jeans and need to cover it up until I get home (other girls keep an extra pair of underwear or shorts with them in cases of very heavy bleeding)
*I make sure to eat healthy (lots of iron!), get lots of sleep and avoid sleepovers and pool parties. ;)

But there are issues besides periods, right? Like regular bleeds and injuries! What about those?

How I Handle It:
*Key in this, in my opinion, is being comfortable talking about your bleeding disorder with the people you're with (especially as we girls get older and start spending more and more time out and away from home!)
*I keep a First Aid kit in my backpack that has band-aids, QR powder, a gauze pad or two and a couple pads
*I have at least two good ice packs that are constantly in my freezer and ready to go when I need them
*If I'm out and something happens, I don't stay quiet and pretend like everything's OK, I'll ask for band-aids or an ice pack and just say that it's no big deal so long as I take a few minutes off to deal with the injury
*If I'm going out of town I make sure to bring a travel first-aid kit (I also keep a Medical Emergency ID Card in my wallet and backpack)
*I make sure my friends know about my bleeding disorder and why I can't participate in certain sports
*(Again, this deals with being out and away from home) I always wear my Medical ID Bracelet and never leave home without it!

In order to take care of yourself, you need to know how to take care of your bleeding disorder. Educate yourself! Read (reliable material that has been approved by doctors, not Yahoo! Answers) and study and ask questions when you go for check-ups at your HTC! And don't stay quiet. Don't ever keep quiet because you're embarrassed.

Also, talk to other girls with bleeding disorders and see how they prep for school and work while living with a bleeding disorder! What tricks have worked for them? How can you swap information? Learn, live and grow. :) And be proud of who you are!

Who you are because of your bleeding disorder is very special. You're unique and strong. Live like it! Remember to take care of yourself, remember to take control of your bleeding disorder and most importantly remember to be brave!

Self Esteem and Your Bleeding Disorder

"I'm so ugly."


"Maybe if I were more normal, I'd have more friends."


"I'm so embarrassed...I can't say anything." 


"Why can't I be like everybody else?" 


Self esteem issues.

Every teen has them, especially girls, and sometimes we let those storm cloud thoughts steal our sunshine. And sometimes, living with a bleeding disorder can make it even harder to keep a positive outlook about the face in the mirror staring back at you. Sometimes bruises on your legs ruin that summer tan you've been working months at. Or a nosebleed crashes your party in the middle of an outing with your girlfriends. Or you have to miss a swim party or a sleepover because you're on your period and you're afraid you'll bleed all over yourself.

Every single one of those instances has ruined my day at one point or another. Some more than once. And it always manages to get me down...way down. I'll sit down and cry for a while, wishing I could be normal and go play paint ball or swim with all my friends...but it never changes anything. And it always makes me feel worse.

A lot of Doctors and Nurses will tell you that you need to keep a positive outlook on life. And they're right. :) Why? Because sometimes, honey, positivity is all that's gonna keep you from smacking into rock bottom. You can't be "normal" like everyone else.

But hey, normal is overrated anyway. :)

Whenever you're having those tough days, try something like this:

*Give yourself a pep talk in the mirror before you leave for school or work
*Blast your favorite playlist of "feel good" music and dance around for a while
*Put on your best outfit, just to make yourself feel a little better
*Treat yourself to a hot bath or shower, maybe with a little ice cream to snack on
*Call up a friend and talk, maybe even cry a little, just to get it off your chest (even better would be to have a friend who also has a bleeding disorder. :) Just to have a little common ground!)
*Read your favorite book or watch your favorite movie

I like to give myself mirror-pep-talks and sing out loud to all my favorite feel good tunes. Try finding a routine that works for you!

And always remember that you--your bleeding disorder included--are beautiful. And special. :) So give yourself a pat on the back for being tough enough to make it this far!