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

No comments: