A question for the Hemophilia A Community

Imagine if you could travel back in time and meet the person you were when you or your loved one were first diagnosed. What advice would you give them? How would you describe to that person how you feel now?

Answers from the Community

I would first say to maintain as much of a stress-free environment as possible, do tons and tons of research, speak to other families that have children with this chronic illness. And I would say to my old self, just stay strong and stay positive because that is extremely important.

I would tell them, don’t worry. I know that it seemed tough to start, but I would just tell them that there’s really nothing to worry about just so long as you take your medicine on a regular basis. And I would tell them that I’m healthy and I’m happy now.

There’s so much I would tell the person when I was younger now than what I know about hemophilia and learning that it’s not something to stress out or get traumatic depression about. That it is something that can be dealt with and it’s not something that you constantly fear from the point of fearing death at all times.

Advice I would share with the younger self, when finding out about being diagnosed, so I was pretty young. I was two. So would probably be a little bit after that, but basically, while friends and people that you are seeing every day are doing more risky things and you get kind of jealous or envious of that, just know that there’s other alternatives out there to look for. Things get better. There’s a lot of different avenues to go and make the best of life.

I think if I could go back in time and kind of have a do-over, one of the main things I would do would be to react quicker when I notice a bleed or any swelling, because being a new parent, not knowing what a bleed looked like, there were times that my child did have a bleed, and I wasn’t sure if it was really a bleed, so we didn’t treat it. So, looking back, I think that would be one thing that I would do different.

Not to be afraid to try different medications, even though family members don’t necessarily agree with those, because what’s right for one patient is not always what will work for the other.

If I could go back in time, I was a baby when I was diagnosed, but if I could go back in time and talk to either my parent or myself, I would advise them to factor more often to go on a prophy treatment regimen. I was on an on-demand, so there was a lot of joint damage that was done unnecessarily just because we didn’t factor as often as we probably should have. So that would be the biggest piece of advice, is just avoid that damage by factoring more often and on a regular basis, but also just to not be too upset. There’s really nothing holding you back. Just be prepared as you get older to make money with your mind rather than make money with your body because your body is eventually going to wear out.

If I go back in time and tell myself in a younger version, I would say that, “Don’t be discouraged. Yes, your life is going to be relatively difficult compared to those around you, but it is manageable. Life is worth it. The pain that you experience on a daily basis is not worth giving up for. I used to think that I was so much different that I didn’t matter, that I didn’t want to be here on this earth, but day after day I experience and just have great experiences and wouldn’t trade it in for anything.”

I would tell myself that I’m strong and I can manage this. I would also tell myself that I need to be the biggest advocate for him and not always listen to my intuition and not let doctors push the way if I know something is different with my child and to always listen to my intuition. The other part of that question, how would I describe to that person how I feel now? I feel strong and empowered by everything that we’ve learned and gone through, and now I feel like we can handle anything. We’ve been through the worst of the worst, so now we can get through anything else that comes our way.

Well, my husband was born with hemophilia so he’s always had it. It’s part of him. It’s who he is. In the eighties there was some stigma, but I met him in 2008 I think, so it hasn’t been an issue.

If I was to go back, I would probably tell that person, myself, to make sure that you include your immediate family earlier on, on the process. I still, to this day, have family members that don’t understand the severity behind it and hear comments of how they wouldn’t … They would never give … be able to do what we do, by sticking the child or giving the child medicine. But sometimes that’s discouraging because you don’t feel like you have any support besides other people that have children with the same disease, and that can be kind of disheartening. So, also you realize that a lot of the weight’s going to bear on your shoulders, and just make sure you’re prepared to be … take it alone. Don’t expect those people that you think would be the ones that would step up to step up. Often they’re intimidated by it. Try to find some friends that aren’t intimidated by helping out.

I was diagnosed when I was born. So that’s been 53 years ago. It was definitely different back when I was a child because we had a lot more things going on. The treatments weren’t nowhere near as good and they were even somewhat dangerous because of the hepatitis C and the AIDS epidemic. I would say I wouldn’t do a whole lot different than what we had done. Maybe tried to be a little bit more proactive with the joint damage, but I guess by icing or something of that sort, so that’s the best I can answer that question.

I would tell them not to worry as much as they were then, and that everything is improving. So there will be better treatment in the future. So just hang in there.

Keep your head up, stay compliant and do what you need to do in order to live a happy and healthy life.

If I could go back in time, I would tell my former self, sounds cliche, that it would be okay. It’s a scary thing. It can be life-threatening at times and a lot on uncertainty but, yeah. It’ll be okay and it’ll make you strong. Feel like my words would be snazzy for younger me but the person who’d really need them is my mom. Yeah, I would tell her that it’d be okay too and that her boy’s will be hurting sometimes and it’ll make them who they are, though, and long term blessing. Truly is.

I will advise myself to be more careful with my stress levels and also don’t skip any doctor visits and that’s it. I think managing mental and spiritual and family relationships, it helps a lot when you have a life-threatening condition.

I would say that my husband is definitely a fighter and he’s been through a lot of stuff. There’s been times where he’s almost died from this disease. He is a severe type A, so we have to monitor everything very carefully. If I had to tell anyone advice about this, I would say, make sure that your loved one takes their factor like they’re supposed to and to be open-minded about switching to different factor brands. Especially since he went from Kogenate to Novoeight, there’s been a big difference because now he doesn’t have to refrigerate it or anything. That’s really nice. There’s just different things you have to be open-minded about before you make a decision and make sure you know all the facts about it. HEMLIBRA was something they were pushing a lot. But apparently, there was 44 deaths. He’s never had an inhibitor, or I would definitely say to monitor these things very closely.