Please describe how your or your loved one’s condition impacts your day-to-day life. What frustrations or challenges do you experience? And what have you done to adjust to these challenges?
We’ve had to limit some of the things that we would do with our children to avoid bleeds within the…And we have tried different medications to do that, to help when a bleed does occur.
I don’t really have much struggle in my life. Luckily I take a medicine every … I’m on prophylactic treatment, so I’m taken care of. But my day to day life is not really affected much.
Day to day, hemophilia affects me because of my disability with brain surgery caused by the hemophilia. It affects everything that I do every day. I have to be very careful about not falling and very careful about not causing a bleed due to tripping or falling. Usually, I’m in the wheelchair most of the day. Yeah, it dramatically has affected my day to day life.
My day to day live has been affected by hemophilia by, well, I don’t think about it too much after all these years, until I have to if that make sense. I’ll go about my daily life and do things that nobody else around me will, but something like a knee bleed will flare up and I’ll have to accommodate for myself and advocate. I’ve learned to deal with it by just trial and error. I still continue to fail and not advocate and hurt myself on accident. Yeah, day to day feels so normal that it can be hard to see how it is impacting, but sure as Hell can be frustrating. We live with a lot of pain, especially. I’ve had a lot of bleeds in my life, saw some longterm damage, and, yeah, it’s frustrating.
It impacts our day-to-day life and is very frustrating when he’s having an active bleed or the medication just seems to be taking a little longer to work, but we always manage with ice and elevation, and things seem to be going pretty well.
So for frustrations on daily living with hemophilia, some of the big ones that I’d say would be lowering your risk and making sure that you’re always prepared as far as bringing, whether it’s medication, supplies, anything like that with you. Long trips, make it kind of hard, any type of travel, especially since the medication has to be refrigerated. So frustrations around being prepared and then also not being able to do certain things that you might want to do. So whether it’s friends doing something that’s a little bit more risky or anything like that, just making sure that those things are more fit to your lifestyle with hemophilia.
My child has hemophilia. He was diagnosed at 10, he is 17 now. He’s on prophylaxis and it impacts us not so much on a daily basis anymore because he is on prophylaxis. But before, when we were on as needed, it could affect us at any given time because it was kind of like a rollercoaster. We didn’t know when he would have a bleed or not.
I have joint issues. So I’ve had to have an ankle replaced. So just mobility issues and the depression that goes along with that. Not being able to get around and stuff like that probably has been the biggest hurdle for me and for my wife, just as far as my hemophilia goes. So yeah, just the pain management, the replacement of joints, and just the mental anguish that goes along with it, recovery is the biggest thing.
Hemophilia affects my life and every aspect. As a 38-year-old, who’s been dealing with this my entire life, the pain that I experience on a daily basis in my joints has just been getting worse and worse. I’ve made a lot of changes in my life. As far as physical activity has gone down quite a bit. When I am forced to be physical, even as much as walking, I try to take precautions as in bringing a cane with me, when necessary, using crutches or a wheelchair. Even on good days when I go shopping, I know I need to limit the steps that I take so I will take a motorized scooter if they have them available. Just try to keep up on pain medication to limit what I need to just to get by.
It impacts our day to day life because every single day we do an intravenous infusion to give him the treatment he needs to live a normal life. It’s challenging because we’ve gone through a lot of trauma in the past, and overcoming trauma when we’re triggered every single day is definitely a frustration and a challenge. What have I done to adjust? I do a lot of therapy. I’m involved in the community. I do a lot of PTSD treatment.
We have to always be aware of possible cuts, punctures, pain caused by bone bleeds and joint bleeds. We can’t travel without a medicated bag. We have to constantly be aware of possible hospitals nearby that have blood banks and that has factor available.
The daily challenges of dealing with a child with hemophilia. So the biggest challenge is trying to get the child to understand that they actually have a disease, especially from younger age. You have to minimize their activity, that a normal three-year-old wants to do everything, but they can’t do everything. Sometimes it’s difficult to get them to understand. I believe that’d be the biggest challenge. Then the medicine and getting them to continually get shots. I still believe a three years old doesn’t want to get shots. So it’s just very hard to deal with it that way.
Well, the biggest is my pain that I deal with. I have several joints that are damaged from bleeding into my joints. What I try to do is when I have a bleed, take the factor as soon as I can and prevent it from doing any more damage. That’s the biggest frustration that I’m dealing with on a day to day basis.
It changes our day to day life by we have to schedule around the infusion times and make sure we have all of our supplies with us. We have adjusted our schedule to do this by making sure that we are home and do these infusions first thing in the morning so that we have the rest of our day available.
I would say that the daily treatment and planning ahead is a little bit of an issue. Sometimes household, wife, children can throw a wrench into things and alter the course of planning for the treatment to keep the hemophilia issues-
Well, when I’m bleeding, it impacts my life and all my family life because they have to take care of me. And as usually hospital problems, I have to be admitted at the hospital. And that’s a lot of stress and also, being a woman it’s more difficult. When I’m not bleeding, it’s okay. I just have to take care and my family is very supportive. After the hospitalization, I have to infuse myself. I do it myself with these IVs every eight hours and sometimes they help me, but when it’s late at night or very early in the morning it’s difficult. What have I done to adjust to this challenges? Well, it’s life. So it’s my life and I have to face it. It’s part of my life.
My husband takes his factor every other day, and it’s time-consuming. And I think he definitely needs it, obviously. He’s had this since he was born. And I try to learn how to help him in any way I can. The challenge is getting home before the day’s over so he can make sure to take his factor. And sometimes he’ll forget, and I have to set alarms on my phone to remind him. That’s really the only thing, though, and then the yearly physician visit is up in Denver, so that’s always a trip. But he went from Kogenate to Novoeight, and I think it’s a good change for him, especially since he doesn’t have to refrigerate the Novoeight. That’s it.