What resources do you wish you had to help manage your or your loved one’s condition, but haven’t been able to find? What would your ideal support resource be, and how would it help?
To be honest, I believe that I have pretty much every resource that I need. I live a bleed free life, I have zero bleeds and I have really everything I need to succeed with hemophilia and live a normal life. So there’s not really any resources that I’m missing. I feel like I take my shots as I need to, so an app for a smartphone to track that is not completely necessary for me. And then just having people in the community like I mentioned in the last question, I think is a great thing as well, and I have that. I have great friends and people who encourage me and I encourage them as well and so I think I don’t really have any missing resources right now for hemophilia.
I am very connected within the hemophilia community. Some of the resources, I think that in general, for other people that would be great is educational. I did get my degree through voc rehab, and I think that more people with hemophilia need to get their degrees and learn about things that are available for their education. Whether you get degree or whether you go to technical school or learn a job just through voc rehab. So all of that’s available, I wish more people know-
This is a hard question. I feel I have a very, effectively large, support network, that I’ve built over years and years. I don’t know if there’s any system that I truly long for, more so just amplifying and having more of the systems that we already have. I feel the biggest one is just community events. You can sit in presentations and learn scientific facts, and things like that, but the resource that really gets everybody through this, I think is just the community. Such a cool place. It’s one of the only few states that I’ve seen where it’s so tight-knit and you truly do form a family from birth to death. It’s not a flippant small portion of your life. Maybe, with COVID, more online community. That’s what I long for. That could be an app or some form of social media. But, yeah, I’ve missed that a lot during this last little bit.
Maybe a printable calendar page that could be added to a notebook or a day planner, or something along those lines.
I think we have lots of resources available. I wish we had more resources available in our area where we live and not so broadly in the United States. But the hemophilia community is very small, and so it’s very easy to talk to other parents that are going through the same thing.
This one’s a tough one. I mean, as far as the resources available that I would use, probably something to make it easier to travel with. A medication that needs to be, it needs to be refrigerated. That’s tough, any type of resource out there, on any programs I’m not taking advantage of whether it’s financially or even just charitable type things to help other people. That would be good. And I guess just any resources for friends or family that are wondering how they can help too. I don’t always have the answer there, but it would be great to know things that they could be getting involved with if they felt like.
I just think if I would’ve found those things earlier, it would have been more helpful.
That’s a really hard question in this day and age. Because with the internet, we do have so much information and I feel like the national organization, HFA, and NHF in conjunction with the treatment centers and the local chapters, I think they do a really, really good job. One of the biggest things though is just navigating insurance. So if there was people that we’re able to really sit down and educate you on how insurance works, what a deductible is, what a copay is, what all this stuff, how it relates to hemophilia and how to some sort of a national database organization to help you find resources to help you pay for the things, that would be extremely helpful.
I can’t think of any resources that I’d want to have that are not available to me. The only thing I could think of is I wish there was more advocacy groups that would push for current medications to be available for all hemophiliacs regardless of what insurance that they have. The newer medications are relatively hard to get unless you have private insurance.
That’s a tough one. I can’t think of any resource that I wish I had to help. We’re pretty self-sufficient at this point. When we do have issues that we reach out to the community first. Ideal support resource? Honestly, I don’t know. I can’t, I can’t think of any. Yeah, sorry. I can’t think of any.
Probably any… I think we have all the resources we need right now. I think it’s just fantastic.
Yeah, this one’s a little difficult. Don’t know if I’m going the right direction. But for me, the best help for me would be family, to get them on board with some kind of class that they could take. And I’m talking about family like grandparents or aunts and uncles, those ones that would be willing to take a class or something to actually be able to administer the medicine. I don’t know. I mean, they offer stuff to us. But I don’t know if they offer stuff to family members to learn how to be sterile or learn how to access support, those types of things, or even administer the medicine. That would be the greatest thing that I would think would help.
I guess the resources that would help… Things change so fast these days, of course, it’s a lot of times they are developing more and more treatments and so forth that maybe are even better than what we’re currently taking, and sometimes it’s a little slower to get around to, I guess, the average person. So I would like, I guess, to have a little bit more access, quicker access to more better treatments.
The only resource I think would be when there’s a new medication that comes out, the trial information of each patient up in trial, their age and condition level, the severity of it and how it worked for them, and how long they have been trying it.
I don’t really have… I’m pretty happy with how I manage my hemophilia now. I would not say that I am very… I wish there was other resources out there in order to treat it. I have a pretty good job, I have a great family, I’m surrounded by great people, so I would have to say I’m overall pretty blessed.
I think, I don’t know, when there’s an emergency and you have to call the specialty pharmacy and they give you all those numbers that you have to press. I think this has to be automatic, or maybe an app, or maybe something easier that not to put the family in a lot of stress.
I don’t think anything should be done differently. I think this is what works for him, and it’s just about taking his factor. Since he’s had this his whole life, he knows most of this stuff already, so he doesn’t necessarily need any other resources other than what his doctor has told him and everything. We also are both on Rare Patient, the surveys, so we take them all the time and it helps, and the money helps really a lot, especially because we work part-time and we both have illnesses.