A question for the Hemophilia A Community

If your or your loved one’s experience living with this condition were a book, what would its title be and why? And what would you name the chapter you are currently in?

Answers from the Community

That’s funny that you say that because me and my friends always say, “Lord, we need to write a book,” but I would have to say the name of the book would be “Living With the Unknown,” and the chapter that we’re in right now would have to be “Smooth Sailing” because ever since we started prophylaxis, we’ve not had near the complications that we’ve had in the past.

I think the title for my book would be “Overcoming.” I think I’ve overcome a lot and have succeeded in living with hemophilia in a very, very easy way. I didn’t have much adversity, but I think overcoming just birth and my parents being so scared and just being able to live with this has been fine. And I’m glad that I’ve been able to overcome a lot, taking the shots that I take every third day. So I think “Overcoming” would be the title, and I think the chapter that I’m in right now, and I think pretty much everybody is in right now, I think the chapter would be “COVID-19, The Coronavirus.” I think it’s been a difficult time for me, as a musician, because I haven’t been able to perform. I haven’t been able to get in front of people. My job revolves around people, so that’s been very tough for me. So luckily, I have had no problems with hemophilia in the COVID-19 outbreak, but that’s definitely the chapter I’m in right now. And yeah, I think “Overcoming” would be the title of my book.

This is a good question. What would be the title of my book? The title of my book would be “Overcoming Adversities.” And the chapter I think that would be most important would be “The Use of Education” to overcome your… Could say adversity, or you could say your disabling event or disabling community. Yeah, the title of the book would be “Overcoming: Inspiration for Dealing With Adversity in Your Life.”

The name of the book would be called “Silent Illness,” or “The Invisible Illness.” But, I’ve spent so much of my life looking like every other dude around me. There’s nothing on the outside of me and my problems with hemophilia that looking, able to distinguish that we have it. Maybe, maybe a bandaid on the arm, some co-band wrapped around for an infusion. But overall, that’s something you have to question to find out about or something that the other person has to be willing to share for you to know. The current chapter I’m in would be something along the lines of “Taking the Left Path in the Fork in the Road.” Something like that. I say that because I still see myself, even last night as I was chilling with people, still find myself running from my disease, of sorts. Not advocating and not wanting to be in pain, but also at a turning point. Like a left in the fork. And I feel like I’ve accepted it. Truly tried to wear it on my sleeve more, so… The juxtaposition of running towards and running away from, I definitely feel a stronger pull towards the running towards the acceptance and the liberty that comes with learning something hard, honestly.

“A Day in the Life of Hemophilia.” And the chapter I would currently be in is “How to Help a Teenage Boy Maintain Hemophilia in a Busy World.”

Title of the book would be something along the lines of “Adventures of a Hemophiliac.” Currently the chapter would probably be around, maybe something to do with, something to do with like COVID or something around those lines. I also just bought a house, so something about maybe progressing forward, doing well in your career. So something about progression.

We would call it “Hemo Strong,” and right now it would be “Moving Mountains.”

I’ve never really thought about that, as far as what a title of my book would be concerning my hemophilia. Man, that’s a hard one. I guess, for lack of a better thinking, better title would be this, I don’t know, “This Crazy Bloody Ride.” It has been crazy. And at times, it’s been bloody. But it’s been a good ride. If I had to choose a disease in the United States right now, having hemophilia is certainly not the worst one that you could have. So, I would definitely feel blessed with the treatment that we have, the experiences that we’ve been able to have. Through it, met some really amazing people through this experience. But yeah, it would be a tale of strength in overcoming obstacles and the both emotional and physical. But yeah, I guess, yeah, “This Bloody Ride.” I can’t really think of a better title right now.

If my journey was going to be titled in a book, I think it would be “The Rough Road Ahead” because it is a difficult road, but it’s not one that is impossible to travel. Just one that has to be taken one step at a time, continuing to go forward, and just dealing with the adversity that is ahead. And the chapter I’m in right now is “Perseverance.” Sometimes I feel like I want to give up and just live the life of sitting in a chair and not having to deal with the pain, but that’s not what life has in store for me. So I just manage as best possible. I know that it will continue to get harder as I get older. But as I’ve stated before, it is a life worth living and I appreciate everything I have in my life.

The title would have to be something about trauma. “Learning to Live with Trauma Every Day.” The chapter we’re in now would be “Healing.” He was hospitalized last year. Last August actually for almost the whole month of August. We haven’t had any major issues since he was discharged from the hospital but we’re still healing from that. This is definitely a chapter of healing our trauma and PTSD.

So it’d probably would be “The Evolution of Hemophilia,” or “I Have a Different Pain Threshold Than You.” We could have a… I don’t know. What would the title of that book be? Because I’m three-quarters of the way into this book. His parents would be much better at having a conversation about early life, and how much medication he needed, and what it took, them going back and forth to the hospital. I met when he was a grown-up, so he and I have had a regular relationship, not one revolving around his condition. So I think that his book would be called, “It’s a Regular Life” or, It’s my…I don’t know. It’s something like that. But that’s where we are.

Name of the book would probably be “Where Do We Go From Here?” And the chapter would probably be “Still Figuring This Thing Out but We’ll Get There.”

What would the book be called? Well, I guess, “Take One Day at a Time.” It definitely, over my lifetime, I guess the pain, the bleeds, the lack of mobility has all been a part of what I’ve dealt with, but I would say I would be probably towards the final chapter, hopefully, the book would end well, so, with some of the new treatments and things that they’re coming out with. So, I guess just taking it one day at a time and living with it and trying to live as normal life as possible. So, I would suppose that’s the response I would give.

I’d say “Living with My Condition,” basically just a description of what it’s like to live with hemophilia, and what it feels like to go through a bleed and treatment, and going through the advances of treatment too from start to where they currently are.

I wouldn’t even know what the title of the book would be, “You’re Normal,” maybe the title of the book. No, let’s see, if it’s a 10 chapter book, I’d probably say I’m pretty close at the tail end. I try to do what I want to do. And I manage my bleeding disorder to allow me to do what I want to do. So whether that’s woodworking or running four-wheelers or hunting, or working on something at my mom’s house, or my dad’s house. I don’t usually let the bleeding disorder get in my way. And it’s pretty well controlled at this point.

The title I know, “Living a Normal Life with Hemophilia” and the chapter will be, I don’t know the same thing “Being Happy” and now I’m 61. So I think I’m just happy being with hemophilia, no problems at all, I’m normal. Thank you.

“Hemophilia Severe Type A Journey.” And then, the first chapter of the book would be… A chapter in the book would be “Support” or “Advice,” “Guidelines,” “Medicine.” I can think of a bunch of different things that would go great in a book.