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
**PICTURES COMING SOON!**