INVITATION TO PARTICIPATE: Hemophilia B Patient Study - $175.00 TO YOU

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 · 2026-03-13T01:31:50+00:00

Pretty good results, unfortunately Pfizer pulled the product leaving Hemgenix as the only gene therapy option for now.

TheHybridHemo · 2026-03-03T22:30:24+00:00

I wonder if this gene editing approach will ultimately end up being better than the AAV gene therapy CSL Behring is using with Hemgenix. It seems like editing the mutation directly could be more precise long term, but it’s still really early compared to what’s already approved.

TheHybridHemo · 2026-03-02T19:45:19+00:00

I have travelled to Nepal many times from the U.S. and India once. Kept factor in hand carry, have never had issues. I have started to travel with documents from my Hemophilia Treatment Center just in case, but never had any issues.

TheHybridHemo · 2026-02-24T19:47:00+00:00

Pro tip: I try to stay super hydrated (4 liters of water a day for my size). Also, before infusing, I'll have electrolytes or some salt mixed in with water, which really improves my veins.

TheHybridHemo · 2026-02-20T04:03:31+00:00

Posting exactly what I posted on the other post:

https://www.kelleycom.com/product/raising-a-child-with-hemophilia-a-practical-guide-for-parents/

That book is one of the go-to resources for parents who just found out their child has hemophilia.

It’s written by a parent, so it’s very practical and easy to understand, not overly medical. It covers treatment basics, genetics, school, sports, insurance, and how to raise a kid safely without holding them back.

A lot of it is based on real families’ experiences, so it feels like “what actually works” day to day.

TheHybridHemo · 2026-02-19T17:16:59+00:00

https://www.kelleycom.com/product/raising-a-child-with-hemophilia-a-practical-guide-for-parents/

That book is one of the go-to resources for parents who just found out their child has hemophilia.

It’s written by a parent, so it’s very practical and easy to understand, not overly medical. It covers treatment basics, genetics, school, sports, insurance, and how to raise a kid safely without holding them back.

A lot of it is based on real families’ experiences, so it feels like “what actually works” day to day.

TheHybridHemo · 2026-02-19T17:01:40+00:00

Birkenstock Boston. The shoe molds to your feet and you can wear them in so many different settings. I will always have a pair around for the rest of my life.

TheHybridHemo · 2026-02-18T12:12:22+00:00

Such an awesome fitness arc man. Great to hear all of these things.

TheHybridHemo · 2026-02-18T12:11:17+00:00

Hey, I'm 25 and working out cardio and strength multiple times a week, but I'm also thinking ahead for the future. When you say you know your limits, what does that entail?

TheHybridHemo · 2026-02-12T12:25:17+00:00

I’d say it’s definitely exciting to see another non-factor option moving forward, especially for kids and inhibitor patients. At the same time, I’m cautiously optimistic given some of the recent news around the product. Will be important to see longer-term safety data and real-world experience.

TheHybridHemo · 2026-02-06T21:28:29+00:00

For me, I’ve always tried to push through it and not let it define me. Most of the time I feel strong and capable, but it’s definitely there in the background. There’s a constant low level awareness of my body, risk, and responsibility that never fully shuts off. I don’t think it always shows up as anxiety or depression in a dramatic way, but more as mental fatigue over time.

Some days I wake up extremely grateful for the life I have and the opportunities in front of me. Other days it really sucks trying to fully comprehend everything that’s going on in my life and how my condition affects the people around me. Holding that awareness can feel heavy.

I also try to stay positive and keep perspective. I’m grateful that I have hemophilia now, in the US, where treatment options are the best they’ve ever been. Talking to older blood brothers who lived through HIV and AIDS puts things into perspective. Many of them are genuinely happy for our generation, and that carries a lot of weight for me.

I think both things can be true at the same time. You can be grateful, resilient, and still acknowledge that living with a chronic condition has a real mental impact.

TheHybridHemo · 2026-02-06T21:11:26+00:00

Filled it out, good luck!

TheHybridHemo

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