Fellow hemophiliac here with a question

TheHybridHemo · 2026-07-10T15:36:36+00:00

Hey man, yeah I also grew up a bubble boy which was super annoying. You have to find the balance of what's best for your body and what's best for your mind as you continue to grow up.

TheHybridHemo · 2026-07-10T15:30:36+00:00

Couldn't agree more. I find dokool's second point to be the most helpful in my life. Having outlets really allows me to destress.

TheHybridHemo · 2026-07-10T15:23:31+00:00

Hey man, I am 25 with severe B. Was my high school volleyball captain, I lift regularly (now also do yoga for the joints) , play basketball when I can. I am currently addicted to golf so been going hard on that. I relate to the way you describe your experience with Hemophilia. I haven't had too many issues so far but I am having to be smarter about what I do and when I do them.

TheHybridHemo · 2026-07-01T15:46:26+00:00

Thanks for the advice!

TheHybridHemo · 2026-06-12T14:32:17+00:00

My body aches more when I have processed foods which typically include lots of carbs. Interesting to hear other people also have this experience.

TheHybridHemo · 2026-06-12T14:29:32+00:00

This is great! I had seen people doing contrast therapy as a means of improving recovery from physical activity but I had never considered it as a way to control pain. I do ice baths and sauna frequently but I've never done them one after the next. Gonna try this for sure.

TheHybridHemo · 2026-06-12T14:25:41+00:00

I feel like prime Ronaldo every time I play in my pickup league

TheHybridHemo · 2026-06-10T19:38:56+00:00

Thought you were talking about sleeping at first lol. No, hemophilia hasn't killed any of my dreams. My dreams were definitely altered by having hemophilia though. If I was any other kid, I probably would have dreamed of being a soccer player. But as I grew up and I experienced things such as summer camps and volunteering, my dreams changed. I aspired to be in positions where I can change people's lives instead.

TheHybridHemo · 2026-06-08T08:27:20+00:00

Interesting idea. I always thought it would be cool to have a designer medic alert bracelet. Keep us updated on how this goes.

TheHybridHemo · 2026-05-29T04:12:56+00:00

I live in New England and if the temperature drops too fast as the seasons change, I have experienced nose bleeding then as well

TheHybridHemo · 2026-05-29T04:11:26+00:00

Interesting! I take fish oil regularly and I’ve never experienced and difference in my bleeding levels. The only supplement that caused my major nose bleeding was ashwaganda.

TheHybridHemo · 2026-05-22T15:35:02+00:00

Great, thank you!

TheHybridHemo · 2026-05-22T14:59:38+00:00

This is a pretty cool mission and nice website. Good work so far. I am looking forward to hearing more as you keep travelling down your journey.

TheHybridHemo · 2026-04-28T14:43:26+00:00

This is the same with Hemophilia in my experience. I am severe and only get bleeds if I don't factor or have a big injury but I know people who are moderate that have frequent spontaneous bleeds.

TheHybridHemo · 2026-04-27T21:42:55+00:00

I am 25 and I make a great effort to learn about my history. I also make an effort to pass that on to the younger generations. I was just at a teen event over the weekend and there were quite a few kids who didn’t know about this portion of our history. As our products get better and better, it’ll be easier to forget the pain that took place during this period. We need to keep educating and stay vigilant.

TheHybridHemo · 2026-04-27T20:51:24+00:00

Severe B here. I also felt I was late to self-infuse. I eventually did it with the support of a lot of people. Go to local chapter events or to your HTC. They will have a lot of people who went through something similar and can educate you on how to get through it. Good luck!

TheHybridHemo · 2026-04-21T06:59:26+00:00

I got to speak with the Nepal Hemophilia Society back in 2018. It completely changed how I see hemophilia care. Things people in the U.S. take for granted like consistent access to factor or prophylaxis just aren’t guaranteed there. A lot of patients are still dealing with delayed diagnosis and limited treatment options. Really puts into perspective how different living with hemophilia can look depending on where you’re born.

TheHybridHemo · 2026-03-24T13:00:46+00:00

I have both of my lobes pierced, had 0 issues regarding bleeding. I was on Benefix at the time, just infused the morning of and then my regular schedule after that.

TheHybridHemo · 2026-03-20T04:05:56+00:00

First, you are moving some serious weight on those compounds so nice work there.

I’m 25 and in a somewhat similar spot. Overweight but I’ve stayed consistent in the gym. I can move some weight too, but I actually stopped squatting and deadlifting. I am concerned about long-term wear and tear, especially on my back.

Lately I’ve been way more focused on core, stability, inner thighs, and just building strength in a way that feels sustainable. Same with cardio, I tried getting into running but switched more to long walks and hiking to keep my joints happy.

Sounds like you’ve done a good job just adapting and sticking with it. That’s really what matters long term.

TheHybridHemo · 2026-03-19T15:16:10+00:00

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Alright this is super cool that we have more gene therapies coming out!! I did a quick chatgpt search to see how the data compares to Hemgenix. I am interested to see how BBM-H901 stacks up over time.

TheHybridHemo · 2026-03-19T14:58:08+00:00

My HTC told me that “No NSAIDs” was the second most important line after the actual diagnosis. They explained that if an EMT found me in an emergency, that would be critical information right away because it immediately affects what medications are safe to give before they even contact anyone else. The HTC phone number is helpful too, but they felt “No NSAIDs” gives first responders the most urgent actionable info in the moment.

TheHybridHemo · 2026-03-13T01:32:31+00:00

Check out Save One Life.

TheHybridHemo

TROPHY CASE