Throughout the month of March, HF Healthcare will share inspirational stories from people in the bleeding disorder community. You can view previous inspirational stories from people in the bleeding disorder community here. Whether you are a parent, sibling, friend, or loved one, we would love to hear your story! If you would like to participate, Please click here or email us.
…the ways that I give back to the community the most are by mentoring with kids, going to camp and being a counselor, going to the Female Factor Group and talking with moms that are new to the hemophilia community; that may not know what to look for sometimes, or may not know how to self infuse, or may not know that you can have a home healthcare instead of going through the hospital…
1. Tell us about yourself.
Hi my name is Lori and I’m here to tell you a little bit about myself for Hemophilia [Bleeding Disorders] Awareness Month. I am 32 years old and I have mild hemophilia factor VIII. I have a brother who is 31 with severe Hemophilia A and I have a husband who’s affected with severe hemophilia B.
We have participated in everything from camps, to family camp, to holiday parties, and all of the gatherings we have for the community. Now, I’m part of the Female Factor (insert facebook link), which is a group for women who are affected by hemophilia in any way…and I am just living my life.
2. When did your (or your loved ones) bleeding disorder affect you the most?
So my bleeding disorder affects me the most usually on my periods. I didn’t find out that I had a bleeding disorder until I was 10. We found out because I was having a lot of bruising issues and bloody noses. And when I was about 12 or 13 and started my period we knew that there was an obvious bleeding disorder there. I was requiring treatment for my periods, but I do have joint bleed issues. My nose doesn’t bleed as bad anymore, because we did cauterize it but since it’s been so long, it’s starting to wear off. Other than that it’s mainly just my periods on a monthly or daily basis, I guess you would say.
3. What aspects of your (or your loved ones) bleeding disorder inspires and/or motivates you?
So I think really what inspires and motivates me the most is that I’m a woman with hemophilia and I don’t have as many joint issues as the men, but I do have a period and the men don’t. So just learning how to live with that is something that inspires me to go out and talk to other women and tell them, “Hey, this is what goes on and if you’re having these kinds of issues you might want to get tested for a bleeding disorder”. Or, “You may have low platelets or you might have a low factor level”. So I just think having hemophilia and being a woman is very motivating in itself.
4. How do you give back to the community?
So I think that the ways that I give back to the community the most are by mentoring with kids, going to camp and being a counselor, going to the Female Factor Group and talking with moms that are new to the hemophilia community; that may not know what to look for sometimes, or may not know how to self infuse, or may not know that you can have a home healthcare instead of going through the hospital. So I think that I give back to the community as much as I can by helping out and volunteering and spending time with the people I love.
5. What advice do you have for someone who’s looking to get connected in his or her local community/chapter?
Well for us, since we were so young when my mom found out about my brother having hemophilia, really the social worker at the hospital was the one who told us about the family camps and camp, and told us about the holiday parties and the gatherings and all of the things that they have through the chapter to be able to go out in the community and meet people. If you’re looking to get connected, I would definitely say call your chapter, go on Facebook; social media is awesome nowadays for being able to find other people with the same issues that you may be having. There are groups out there, like the Female Factor Group that I’m a part of, von Willebrand [disease] groups, platelet storage pool [deficiency] groups; they have groups for almost any kind of bleeding disorder that you can think of. So I think getting a hold of your chapter and finding out what’s going on is one of the best ways to get connected in the community.
Get Connected in YOUR Community
- Find your local chapter here.
- Get Connected with the Female Factor on Facebook! (Contact the Hemophilia Foundation of Northern California for more info).
- Participate in the Red Tie Challenge for Bleeding Disorders Awareness month.