Jennifer Lynne shares her journey with von Willebrand disease and hemophilia B, reflecting on the misconceptions women face, the power of patient documentation, and the importance of community support. She highlights how advocacy has shaped her life and why sharing stories can drive change in Hemophilia and Me.
Transcript
Hi there. My name is Jennifer Lynne and I write for Hemophilia News Today. I was diagnosed when I was 10 years old with von Willebrand disease and hemophilia B.
Advocacy is an important topic for folks in the hemophilia community, both for women that are living with bleeding disorders.
But, you know, also, I talked to a lot of men who have diagnoses of mild or moderate hemophilia, and they interestingly run into a lot of the same challenges as women and those folks that are mild.
As far as women go, the biggest misconception is that women don’t have hemophilia or can’t have hemophilia. And, you know, we’re discovering now that women can and do have factor levels that are lower than normal.
And in that case, women bleed just like men do. In fact, maybe even more so, because we have to deal with monthly bleeding that men do not have to deal with.
So, you know, there’s a lot of women in the community that are not diagnosed or folks that are undertreated. And advocacy comes into play for all of those folks. I did a lot of advocating for myself, but sometimes you just get so frustrated because you feel like nobody’s listening.
Nowadays, it’s a lot easier because we have things like patient portals where you can take photos of your bleeds and document everything, which is something that I recommend that everyone do.
Even if I’m having a bleed and I’m not going to treat it, I take a photo of it and I put it in MicroHealth, which is the app that my provider uses, and I’ll just put a note like, “I’m not treating this, I’m icing it and elevating, but just wanted to let you know that, like I hit my hand and now it’s really swollen.”
It helps them, too, because if they ever have to justify why they’re prescribing a medication for me, they have documentation of why. And I’ve not had any problems with insurance coverage, but I know that folks who have even children with severe hemophilia, lately I’m hearing of coverage being denied for medications that they need.
So the more documentation that you can provide your provider to help them advocate for you with your insurance company, the better.
I think it’s so important to share your story, whatever that looks like for you. For me, I was very closeted. I didn’t talk about hemophilia. You know, I grew up during the ’80s where we had the HIV bad blood scandal. You know, you didn’t talk about having hemophilia back then. And I kind of have always had that mindset of just not being a part of the community and not sharing.
And things have changed for me for the better since I started sharing my story and talking to people. I’ve met so many folks that I consider very dear friends, just simply through sharing my story.
That’s a great place to start. Whatever that looks like. Like talking to your church or community members. So much can be learned just by simply sharing your story.
