Student Hajar Abuisef sat down with NHF to discuss her involvement in the Twitter account, Dr. Period Hackers. Read these Q&As, and watch the video to learn more!
How did you come to be a part of Dr. Period Hackers?
I'm currently a student at NYU and I'm doing the dual degree program. So, I have an interest in public health for my masters. And I took a public health and society in a global context class at NYU just to, you know, get a sort of feel for the field. And my professor ended up being Dr. Marybec Griffin. So, she was my professor, and I took the class that there's great professor. I really recommend it. And I, she had mentioned once that she has a Twitter with Dr. Period Hackers and it was, it's a really great message behind it. It's just to help women. Understand their period and medical conditions.
And I struck a thought in my head because she said that she was partnered with a hematologist which is Dr. Bethany Samuelson Bannow. I was really interested in research, so I asked her if they were planning on doing any research in the near future and looking for any student assistance.
And she had actually said yes, they are interested in it. It hasn't begun yet, but she offered Dr. Period Hackers. So that's how I started with her. And it's been very great. I actually my first week as launching today.
How does your experience in Hemophilia impact your interest in pursuing public health?
I do a lot of volunteer work with the Eastern Pennsylvania Bleeding Disorders Chapter. And I have since I was really young, maybe like 10 years old and as the years went by, I've just been given more responsibility.
I guess I was a part of leading, well, I still am, the teen group, like the youth group there that it's just a bunch of women and men who need help navigating college, high school, a young adult life with having a bleeding disorder. And it was just basically organizing a bunch of small groups and activities.
And then they also launched an advocacy ambassador program. And basically, what that was, was speaking with local representatives and senators about policy regarding insurance and bleeding disorders, just to keep funding for medications and other things like. With that, I was really interested in the cross section between public health and hemophilia and bleeding disorders in general.
I would say that my work with like policy and volunteering with the local chapter is what inspired me just because it was something I was really passionate about and sort of seeing the intersection between the two became an interest of mine. That's amazing that you could just elevate everything that you're a part of into that.
What was your experience with the Eastern Pennsylvania chapter?
My experience with them has always been really great. It's all about creating a community and finding support. I wouldn't say that, you know, it's there because you have like this great obstacle that you can't overcome, but it's more so a resource and it really helps you with opportunities in life. They do really great things. They offer these programs for like the advocacy ambassador program. And not only does it give you sort of experience.
When you're going through like your young adult life, but it also helps people because these policies are what fund people's medication and their livelihoods, and it also creates a community. So, it creates connections for you and also a support group because not many people have hemophilia. So having other people that do have it around you and being able to communicate makes people feel a little bit less, you know, estranged from the bigger picture.
Were there any resources that were specific to community around periods or people who experience menstruation?
Dr. Tanya Wright was a speaker at a lot of [chapter] events and she's great. She's a gynecologist that specializes in hemophilia. Her and Dr. Peter Cygan are amazing. They're doctors at Penn State Medical, and they would always speak and every year. They would come with new information and provide resources for people who weren't even their patients.
Not only were they giving information, but they were also learning from the community because a lot of the time, doctors don't really know what's going on from like an individual to individual basis because people's experiences are very different than what they learn in a textbook. [Chapter] resources like that have been really great for women with bleeding disorders and on their periods because they sort of teach you these things that you have sort of become to learn that it's normal for you, but they tell you, like it's not normal and they help you figure out how to fix these things.
What advice would you give to other people who are living with a blood or bleeding disorder?
My main advice would just be to not sort of make it feel like you're an outcast or any different than anyone else, because you're not, it's just, it's just a normal thing. You know, it doesn't make you any different than anyone else. Of course, you do have to take care of yourself and go to doctor's appointments, but that doesn't mean it's something that's hindering you. A big piece would be to advocate for yourself because at the end of the day, a doctor isn't going to know what's going on in your life.
So, you really have to be able to speak up for yourself and also really take advantage of the resources provided they're provided for a reason. And they're really great. It provides a really good community and there are a lot of other resources, you know, such as help with your payments for insurance and stuff like that. And they also provide really good opportunities for your work life and being a student and also scholarships. So, I really recommend looking into it.
Is there anything else you would like to add?
I would just like to thank, you know, Dr. Bethany and Professor Mary Beck, just because having Twitter accounts like this, even though it might not be specifically for bleeding disorders, but you know, it started as something that was just for women with periods, but then they found NHF and its sort of reaching a louder platform. And I really wanted to thank them for it because it seems like it's just a Twitter account, but it's really helpful for a lot of people.
Watch Harjar's Q&A video here: