Tuesday, April 17, 2012

World Hemophilia Day 2012!

Today, April 17th, is World Hemophilia Day! In this post well going to include pictures of people sporting RED in support of what WHD stands for and various topics written by Megan and I!

I'd like to start off this post by talking about getting involved. When you have a chronic condition, it's natural to seek out a support group or circle of friends who will understand. It's normal to want someone to talk to, bounce ideas off of and so on. And in this day and age of internet, Facebook and YouTube, you have many support groups and potential friends right at your fingertips! All it requires is a little effort and research. :)

For example, Megan and I met at an annual retreat for Women with Bleeding and Clotting Disorders in Texas. I was diagnosed when I was 9 and went to the retreat (or "camp" as we often call it!) only a few years later. While I was there, I met many girls who also had von Willebrand Disease and who shared their stories with me. I was also educated about my bleeding disorder and taught about medications, safe forms of exercise and 'girl issues' like menstrual cycles and how VWD would affect that. It was a great experience! And the older I got the more I appreciated all that I learned! I would highly encourage all of you (if you haven't done so already) to ask your Hematologist or HTC about camps or retreats like that in your area! Our retreat is for "region 6": Arkansas, Texas, Oklahoma and Louisiana! It's a fantastic opportunity to talk to others dealing with the same issues and complications! I'm sure your HTC staff will be happy to help you find a camp/retreat! :)

Megan also wants to share about her recent visit to the NOW! Conference!:

This year, I was invited to attend the first NOW! Conference in Arizona. I however faced a difficult choice: I could go to NOW! or the WWBCD Retreat. I chose to attend the NOW! Conference because it was being hosted by the Arizona Hemophilia Association, who did a wonderful job by the way, so that meant it would be held in my hometown of Phoenix, Arizona. My mother and I attended and flew to Arizona not sure what to expect. Being that it was their first year, the association had done a poor job of communicating information beforehand. We arrived to a BEAUTIFUL resort with SEVERAL programs to attend, all related to VWD, given that it was a VWD retreat. This was the first time I had met a male with VWD. And mind you I met several, and quite frankly, the majority of them were rather attractive. Which was very disappointing given that bleeder's shouldn't mix romantically. However, it was great to see that it wasn't just girls that are affected by VWD. There were people of all ages, from ALL OVER the US (if I remember correctly, there were 26 different states represented), and the people there were not only people directly affected by VWD, but also their caretakers, so there were support groups for not only me but also for my mother. 
There were "workshops" on sexual education and dating, dentistry, effects on women, nutrition, genetic history, current studies, financial advising, and general information. There were many MANY others, but those were the ones I remember. We were given many breaks to enjoy the Arizona weather and the beautiful resort we were at and they provided a themed dinner and improv comedy night.
The conference was sponsored by many organizations and companies associated with VWD, most notably was CSL Behring, the pharmaceutical company that produces Humate-P as well as other VWD products. They had many representatives there to interact with the people with VWD and to take an interest in their cases and ask what they can do to make things better and easier for those affected with VWD. I have been in contact with one of the representatives and a few doctors she introduced me to. At the closing ceremony, a representative spoke about sponsoring another conference next year as long as the AHA (Arizona Hemophilia Association) was on board.
Overall, I'm glad I went. Though I missed my girls at the retreat, it was definitely a conference I was overjoyed to attend. I don't think there was anyone there, including doctors, that didn't learn something new. I would definitely recommend anyone and everyone affected by VWD to attend!

Also, Megan and I would love to share these links with you! They're all about ways to connect with the rest of the bleeding disorder community and offer support to each other and raise awareness! :)

1. Hemophilia Summer Camps (NHF)

2. Yoga Retreat for Women with Bleeding Disorders

3. Victory for Women with Bleeding Disorders


Friday, April 13, 2012

New Author: Megan! :D

Hi! My name is Megan and as a contributor to this blog, I found it important to share my story. I have attended the NOW! Conference in Phoenix, AZ and the Region 6 Women With Bleeding and Clotting Disorder's retreat, where I met Jamie, and have been able to identify with many of the women and girls there which has offered me great support! Hopefully, someone reading this will be able to identify with my story. Now, as a fair warning, I am an oversharer :)

I am a summer baby, born in Scottsdale, AZ and moved to Texas almost 3 years ago. I am a high school sophomore and am in our National Honor Society. I am in almost all advanced classes and my dream is to move to Seattle, WA and become a doctor. Did I mention I also have Von Willebrand's Disease Type 1?

I'd like to go under the assumption that most of you know what Von Willebrand's Disease is, but I realize that I wasn't very educated about it until recently and some of you reading this might not have VWD. VWD is a bleeding disorder with 3 types caused by a lack of the Von Willebrand Factor in your blood. The factor helps clot your blood and also carries factor 8 through your blood. In type 1, you simply don't have enough of it. In type 2, you also don't have enough of it, but there are several sub-types of type 2. I would try to further explain type 2, but it is highly complicated and given that I have type 1, I don't fully understand it. Type 3 is the most severe type of VWD, in this case, you do not have any of the Von Willebrand factor circulating through your blood. It is very rare to have type 3 because both of your parents must have VWD, of any type, in order for you to have type 3. And even if both of your parents have VWD, it doesn't mean you'll end up with type 3 or VWD at all!

Now, what does that all mean? Basically, it means that you bruise easily, take a long time to clot, are high risk for internal bleeding, and if you are a female, you will likely struggle with your menstrual cycle.

Growing up, there was never a time where my legs weren't covered in bruises, however, I was a very very clumsy child. In fact, I still am. Just yesterday I fell down the stairs at school and sprained my ankle. We never thought anything of the bruises though. My problems with VWD did not start until I was 11. I turned 11 in June and began my menstrual cycle at the end of July. Like most girls starting their periods, mine was very irregular but we were told that eventually it would regulate itself. However, by December, I was having a period every 2 weeks and it was lasting longer and longer. One day in December, I started hemorrhaging. I was sent to the ER by my school nurse. To be honest, this day is kind of a blur, but I do know that the ER doctors couldn't find a reason for my excessive bleeding and sent me to see an OB-GYN. A very scared 11 year old me became a very scared, traumatized 11 year old me when my doctor performed a pelvic exam.

Nothing was "wrong" with me, but my doctor knew that something was wrong. I got lucky, she had just returned from a conference about bleeding disorders and their effects on menstrual cycles, she sent me to get tested for a variety of bleeding disorders including VWD and when the test results came back, I was sent to Phoenix Children's Hematology.

The fact that I was diagnosed very quickly was extremely lucky. We now knew the source of my problems but still had to treat them. My doctors put my on birth control to try and regulate my periods. But, being the child I was, taking a pill every single day at the same time wasn't working. I was put on the BC Patch, but I had an allergic reaction, so it was back to the pills. Everything worked for a short time, but would eventually stop working. At one point, I was on 5 pills a day trying to stop my period that had lasted for 6 months straight.

I have been on a cocktail of birth control pills, patches, shots, hormones, Humate-P infusions, Stimate, and Lysteda. I was the first person in my clinic to be prescribed Lysteda(woo!). Nothing seemed to work longer than 6 months and my Hematologist worked closely with an OB-GYN as well as the Adolescent Clinic at the hospital. Because none of this was working, I did something stupid. And y'all, I do NOT condone this, I do NOT suggest this, nor do I want you to try this. In December, I stopped taking everything, even my vitamins. Magically, my period stopped on its own and I have gone 5 months without bleeding.


And that, is my brief medical history. Mind you many more things have come into play along the way, but that is my story. I really hope that you can identify with some part of my story or that it offered you some type of support, because it helped me to share.

I am an open book, so ask me any questions you would like, and expect to see many more posts from me and Jamie! We would love to hear your stories as well!!

XOXO, Megan <3

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!


Wednesday, April 4, 2012

"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