A question for the Hemophilia A Community

What tools or resources have you found most useful regarding your or your loved one’s condition? This could be a website, a specific organization, or an app for your smartphone. What makes this resource (or resources) useful to you?

Answers from the Community

I think the best resource for me has been other people, and the hemophilia community. I’m very involved in my local chapter THBDF, Tennessee Hemophilia and Bleeding Disorders Foundation, as well as HFA and NHS. I’ve spoken there a few times, and played music, I’m a musician. So, I think those have been the best resources to learn about how other people are living with this and just to have support.

There are several resources that I reach out to. I was on the Board of Hemophilia in North Carolina, but before I got on the board, I was very connected with the organization, the Hemophilia of North Carolina. Really it supplied me with extra people to talk to, resources, things that we get together and do things as a group, keeps you from being depressed, and you reach out and you form a community with your fellows that we don’t really have at the moment before you get join.

I’ve done lots of research online, but I think reaching out to our doctor and getting firsthand information has been the most important tool for us.

There’s two really big resources I can’t live without and have been instrumentally helpful I should say. Firstly, Kingsbury Treatment Centers. They’re specialty centers that are comprehensive in their care. So you have all the doctors you need under one roof, whether that be physical therapists, social work, just general hematology. It’s one building with everything you need hemophilia and growing up there, definitely see doctors come and go and faces change, but definitely some OG’s and plenty of love. It’s a second home and that place has truly, truly helped me through my life. And the second one would be Hemophilia Camp, specifically, I went to Easter Seals up in…it’s in Colorado. It’s a small little mountain town, but it was awesome. I went there since I was six, made plenty of buddies for life, and yeah, you just feel like you’re not alone with your experiences and have older kids to look up to, to have mentors that you can relate to. I’m extremely blessed to have that.

The biggest item that I use or resource that I use is a basic calendar, like a planner. And I write down dosages, the amount. If he’s having any additional problems, I document that. And I take that with me to appointments and such and that way it makes life easier if you document everything.

One thing that I use fairly regularly would be the subreddit hemophilia. It’s basically a forum on the Reddit’s website, specifically around hemophilia. Great way to find out more knowledge about any industry trends, things that are going on with development of different treatments and things like that. Also, just staying in touch with other people that are going through something similar or even just events. So, mainly that’s the one I’ve found most useful for me as far as types of organizations.

I use Microhealth to log his weekly shots. I find that helpful just to help me keep track and it also links to the doctor’s office so they can see that I’m keeping up on his injection. I also have joined a Facebook group for HEMLIBRA and also a Facebook group for women with bleeding disorders, both of which offer lots of support to myself, but also for my son.

The biggest resource for me has actually been probably the hemophilia treatment center and just having access to really good doctors, and then also the local chapter; the Virginia Hemophilia Foundation has been a huge support. It’s just giving us a community, doing a really good job bringing in world-renowned physicians to come in and educate us and talk to us and keep us up to date on what’s going on within the bleeding disorders community. So yeah, between the treatment center and the local chapter, I would say that those are the two biggest organizations that have helped me along the way.

I have to say that the National Hemophilia Foundation has been very useful. They send out literature through the mail, they have support groups. They’re constantly letting me know about new research that’s coming out for medications, so that has been a big one. Also, when I was younger in Michigan, they have a camp for hemophiliac children, which was huge in my younger years, just being around other people with the disorder and seeing how they managed it and feeling kind of normal at a time in my adolescence that I didn’t feel normal being around children in the schools and what not.

The groups on social media have definitely been very helpful, just because we’re connecting to so many other people in the community that have gone through some of the things that we go through. And if we have questions or issues that we need support, we can post in the group and we’ll get hundreds of responses from people all over the country and all over the world. So the social media groups are great for that. I also do like the NHF, National Hemophilia Foundation, and HFA, Hemophilia Foundation of America, their events, because, again, they connect people and they have a lot of educational sessions that we’ve learned a ton from, a lot of experts speaking about it. But the number one thing would be the community, because even though the experts might know scientifically what’s going on and have ideas about that, no one knows the day-to-day stuff, struggles with types of needles or different issues with support, things like that.

The hemophilia clinic and the near Flood Center have just both been phenomenal. They’re available all the time. They call to check-up and do follow-ups and make sure that we have the right equipment, that we have enough equipment, that we have enough factor, that we have all the pieces of the puzzle.

I would say the resources greatest to us is the local Hemophilia Foundation and a lot of the pharmaceutical companies that support the disease. They’ve been really great. I can’t think of the one right now off top of my head, the pharmaceutical company. But the one that we use, they have just been outstanding. They’ve reached out to us. They’ve done stuff that … taking chances, not taking chances, but they weren’t guaranteed to get paid back money. But they knew the child still needed the medicine and they supplied medicine at risk. And that’s very important. Unfortunately, I had during this conversation, I can’t remember the name of the company I should, but I don’t. And the local chapter of the Hemophilia Foundation of Maryland is great. They’ve reached out to us concerned about the child’s care and knowing that somebody else has some more problems and issues and it gives you someone to go to. They can also be a resource if you’re having problems because our children have Medicaid and so they fought for us there and got a hold of senators and people that needed to be notified when they weren’t doing what they needed to. So I would say first thing is with hemophilia, especially with that disease is to get in touch with your local Hemophilia Foundation and become a part of it. It’ll be a great resource for you.

Well, some resources that have helped me, of course, is probably some websites. I can communicate with other hemophiliacs and what they are going through, and I also help them as well, give them advice. I’ve been around a long time, so most of the time I’m someone that has more experience than some of the mothers that are dealing with their son’s hemophilia and so forth. So, it’s helped me, and of course, I’ve helped others as well.

One of the resources that I find more useful is the parent support Facebook pages. There, you can post any questions or compare, “Hey, this is my kid’s sleep. Have you ever had these before? What have you done? What has worked and what hasn’t worked?” And then our other resource is our doctor. She’s always readily available and very helpful.

I pay very close attention to information, data on the websites that I draw from, either NHF and HFA, different manufacturers with new products or new studies that come out. I keep a Microsoft Excel spreadsheet of all my bleeds so I can track my annual bleed rate. And I would say probably my Excel spreadsheet, so that way I can capture the data and relay it back to my hemophilia treatment center in order to be treated how I live the other 363 days that I’m not being seen by the hemophilia treatment.

Well, the National Hemophilia Association gives a lot of instructional meetings and conventions. They have a website. Also, the Hemophilia Center in Miami. They also have activities to inform the patients or the families about new discoveries or how to live a normal life. So I think, without them, without their help and support, this sickness, illness, or whatever you want to call it, would be impossible to bear alone.

Novoeight is a really good brand of factor, and we really like that we don’t have to refrigerate it. I’m not sure if there’s really any negative impact or negative people surrounding him, but he’s been doing really great and he’s got a lot of support. I definitely think it’s a lot of work to keep up with, but it’s necessary.