by Joshua Scarselli.
The Bleeding Disorder Association of Northeastern New York held its Health Day. Various activities brought together the bleeding disorder community on a crisp fall day in Thacher Park. There was a yoga run by James Davidson from The Hot Yoga Spot. Dayana Young (Dank.n3t on Instagram) led the group in a tutorial on various exercises you can do with a hula hoop. The afternoon walk capped off with a leisurely stroll around the park followed by a raffle for some great prizes! The newly elected President of the Board of Directors for the Bleeding Disorder Association of Northeastern New York, Chris Huskie, had a chat with me to let us know more about the association and what they do for the community.
RRX: Can you tell me a little bit about yourself and how you got involved with the Bleeding Disorder Association?
CH: My name is Chris Huskie. I’ve been part of the Bleeding Disorder Association since I was a child because I am a severe hemophiliac. I remember coming to all these events when I was a kid and getting to meet people and learn about the community and learning about myself and my disorder. As I grew older, I took a step back for a little bit, and then I decided I wanted to come back into it and help out. I’ve now been a board member for six years, and I’ve recently been elected as a new president, which is very exciting.
RRX: Congratulations! Tell me a little bit about the association, and what kind of services you offer for the bleeding disorder community?
CH: Good question. The association serves the Capital Region. We have 22 counties that we take care of. We have an assistance program that helps people with bleeding disorders who may be in hard times with things like rent, electric bills, car maintenance, or food. We can also help with gas if they are having a hard time getting to their doctor appointments and back. We have a new family committee that introduces families with newly diagnosed bleeding disorders to us and what we do. They offer emotional guidance and help with education on what to do under different situations. Our organization’s main goal is to help the community in any way we can. Being someone who has been on both sides of that coin, I am proud to say that what we do does help, and we will continue to grow so we can help more and more people.
RRX: As somebody who grew up with a bleeding disorder, what are some of the challenges or things you have to take into consideration?
CH: So one of the bigger challenges is misinformation. It’s a very rare disorder. A lot of people don’t know a lot about it. Some people hear it, and they think, oh, this hemophiliac, he’s going to get cut a little bit, and he’s going to bleed out, and he’s going to die. Like, no, that is wrong. We mainly are concerned about blunt force traumas. So you get internal bleedings that you really can’t necessarily see, but can cause long-term effects. If you were to twist your ankle, then your ankle will get better in a day or two. For us, it might be like a week or maybe more.
Over time, that happens over and over and over and over and over again. Then cartilage starts breaking down in between your bones. Then you can’t move as much as you used to be able to. Early onset of arthritis can happen. I’ve known people — luckily, this doesn’t happen much anymore because of advancements in medication — but I do know people who’ve had their joints fused together. So they can no longer bend their arms, or they can no longer bend their legs because of this.
So it is a big issue, but there are modern medications coming out, which is fantastic. So much better than it used to be. So, but yeah, a big issue that we have as a whole as a community is just getting the information out there. Educating people who don’t know anything about it, so a lot of these events are good not only for people with bleeding disorders, but friends, families, or even just people who are interested and want to know more about it. Come here and learn about it. We’re here for you. We’re here to teach you. We’re here to show you, and you have some fun at the same time.
RRX: Where can people find out information about your events and what the Bleeding Disorder Association can do for them?
CH: A big place is on Facebook. We post a lot on Facebook. We do have a website: https://bdaneny.org. It’s the Bleeding Disorder Association of Northeastern New York. We post everything on there. The information about our different scholarships and different events. We have lots of events all the time. We have dinners that are sponsored by different pharmaceutical companies or new medications, new ideas, new mindsets coming out. So we do have a lot of different dinners. Go and get a free meal, and you can learn a lot about what’s happening for the future for our organization, and for the community as a whole.
Photography by Joshua Scarselli.
