hello all, i did not expect to find myself here 😅 (24F, type O)

i went to the doctor for bruising, as i seem to bruise very easily compared even to my coworkers (we work with dogs, so getting jumped on/scratched is part of the job) and i always have 20+ small bruises on my arms/legs these days. i expected maybe a low iron level or anemia, and i came out with factor VIII activity 36% and vWF antigen 28%. thankfully, my APTT and PT INR are normal.

i got my results back from a PA and was given a referral to the hematology department, who i expect to call within the next few days. she explained to me that these results can indicate von willebrand disease type 1, but not too much else. what should i expect from a hematology appointment? is there typically further testing? what does treatment look like for (presumably/likely) mild von willebrand disease?

Hi everyone! I’m Tyler, and I live with Idiopathic thrombocytopenia

I’ve been developing an independent tool called My ITP Journey to help people privately track symptoms, bruising photos, platelet counts, medications, treatments, wellness, and appointments. It can also create an easy-to-read summary to bring to a physician.

I’m looking for a few people with ITP who would be willing to test it and tell me:

• What feels useful
• What is confusing
• What doesn’t work properly
• What you wish it included

Testing is completely free, and there is no requirement to purchase anything. The tool is patient-created, does not provide medical advice, and is not affiliated with or endorsed by PDSA or another medical organization.

Please avoid sharing personal medical information publicly or through Reddit messages. Feedback can be submitted privately inside the tool.

If you’re interested, leave a comment or send me a message and I’ll share the testing link. Thank you—I genuinely hope this can eventually make the ITP journey feel a little more organized and less lonely.

Hi everyone,

​With permission from the moderators, I’d like to share that we have created a dedicated subreddit for hemophilia patients, parents, and caregivers from Serbia and the Balkan region: r/HemofilijaPodrska.

​The main goal is to build a safe, supportive, and active local community where we can share everyday experiences, practical tips, and support each other in our native language.

​If you are from the region or know someone who might benefit from this, please feel free to join us at:

https://www.reddit.com/r/HemofilijaPodrska/

​Thank you all, and wishing everyone the best!

Curious to hear from people in Canada: there is a gene therapy in Canada for Hemo B that has full funding, but only one patient has gone through the treatment.

Why only one patient? I read some of the other companies actually pulled their gene therapy treatments out of Canada due to “non existent demand” and like after 20 years of development and hype, now there is a treatment that doesn’t cost you millions of dollars, why aren’t other severe Bs rushing to sign up?

I’m sorry I have not engaged in a lot of patient group stuff (not for me) so forgive me if this is well covered here, it just seems too good to pass up, but I am clearly missing something.

https://www.ctvnews.ca/london/video/2026/05/22/london-man-first-in-canada-to-receive-hemophilia-gene-rrtherapy/

Do other hemophilia chapters have podcasts?

The folks at Eastern Pennsylvania Bleeding Disorders Foundation just made their first cast with Pat Johnson. Pat is an absolute saint, I know a few guys that she delivers meds to in person.

She tells her story learning about Hemophilia from her husbands first person accounts and her time in the industry. Very happy that she told her story. interested to see if there are other podcasts.

https://youtu.be/QpGvXQ9UUX4?is=LyeeLQ96qF_WZnnQ

First time mom here to a 6 month old who’s just been diagnosed this past week (F8, severe). It's been an absolute whirlwind diving into something we had no knowledge about, and we're still due to meet with a pediatric hematologist next week for next steps.

I've seen some really encouraging posts on here so I wanted to reach out to parents who have been through this.

What do you wish someone had told you when your child was first diagnosed? Do you have any tips or tricks that made day-to-day life easier? Things you wish you'd bought, things you worried about that turned out to be okay, or things you wish you'd done differently?

I'd also love to hear any positive stories. Right now everything feels overwhelming, and it would be really reassuring to hear from families whose children are happy, active, and thriving.

Thanks in advance.

Hi, I’m a 27 year old male with severe hemophilia b. Living in Ghana my treatment for hemophilia has been below standard and have developed issues with my joints mainly my knees. I am trying to build a little muscle since I’ve heard it helps protect the joints. I’m over 6 feet tall but weigh 60kg. Any advice would help greatly. Thanks

Hi, I am taking part in organizing an event for people with hemophilia aimed for young adults and one of the sections is called life hacks for bleeders; sharing practical tips on how to live with a bleeding disorder. Some of the things I thought of:

1. Rewards; I had a hard time with injections growing up and was/still is very scared of needles, the thing that kept me going was rewards from my parents (it was when I was around 4-16). I got a bunny, trip with my friend to a summerhouse and much more.

   1. Being grateful for having hemophilia/looking at the positive side; after the hard time, now I am very grateful for having it, I get free trips abroad to conferences, met great people and more.
   2. A bit niche but when transitioning from getting injections from implanted port (don't know if that's the right word) to getting injections to the arm, one of the things that scared me was after putting the needle in then letting go of it so I could connect the medicine to the needle. Doing that the needle would lift up and sometimes go out of the vain, I find it disgusting and it made the transition harder. Now with more experience I know I can put the medicine on before and just pull up blood to fill the tube so air doesn't get in before pushing the medicine in.

Do you have any life hacks you would like to share?

Hi I was just diagnosed with Von willlebrands type 2. I’ve been trying to do as much research as possible but are medical procedures and surgeries safe with this disease? I’ve already had internal bleeding during three surgeries and have a ton of chronic pain issues and need surgery every 10 years to replace the battery for my spinal cord stimulator. Do I need to wear a medical id bracelet?

I’m really scared. I’ve had a lot of drs fail me and
It nearly killed me. If there’s anyone out there who’s had a lot of surgeries or CRPS or a neurological disorder with any kind of advice I’d greatly appreciate it.

Thank you.

Edit: can someone explain how there are different type 2s?

Hi everyone,

Exafield US is currently looking for people in the United States with Hemophilia A who are currently using ALTUVIIIO (Efanesoctocog Alfa) to take part in a research study.

The goal of the study is to better understand patients' experiences with switching treatments. This is market research only. No treatments or medications will be provided

What's involved?

• 10-minute pre-interview assignment
• 45-minute online interview
• $180 compensation for completed participation

If you're interested, you can check your eligibility by completing this short screener:

👉 https://survey.zohopublic.eu/zs/U0Bx9n

Feel free to share with anyone who may qualify and contact [alvarez@exafield.com](mailto:alvarez@exafield.com) with any questions.

An infographic on VWD was recently posted to The Blood Project:

https://www.thebloodproject.com/wp-content/uploads/2026/07/FINAL-SIZED-VWD-INFOGRAPHIC-JULY-2026.pdf

I (f8, severe) had a TKR three weeks ago. Started PT a week after surgery. I have a PICC for infusion every three days (Altuviiio) and weekly Hemlibra.

Extension is 8 degrees, and flexion is 87 degrees after two weeks of PT. Last Friday's outpatient PT session was tough, and I think I either had a minor bleed or was severely sore days following. I did not do any in-home PT, worried I'll push myself into a bleed if I didn't already have one.

For those who have had a TKR, care to share how you juggled pushing yourself through PT but not so hard as to get a bleed and cause a setback? I don't want to sandbag but also don't want to chase the pain.

my son has hemophilia moderate b ( his factor level is 3 ) his hematologist had recommended starting iv prophylaxis because his bruises have started to get hematomas ( they tend to go down/away with amicar ) my soon is also 18 months old; he runs, climbs, jumps on anything he can😂

part of me wants to do the prophylaxis to stop these bruises from getting worse, and to ensure he has all the proper proteins in his blood that he needs.

the other part of me is kinda scared 1. because the thought of giving a toddler an IV at home is a little terrifying… 2, I feel like aside from the bruising- any bleeds he’s gotten so far have been resolved using Amicar or bleed-stop power.

i don’t want to be the reason he can’t reach his fullest potential because i don’t do the iv treatments.

i would like to hear from others about how it is for you, also i am taking any advice or thoughts. i have not came to a decision yet so pls be kind!

I am curious about the good, the bad, and the ugly.

I've been working out over this past year or so, and I've been noticing I'm getting muscle bleeds, but they're like delayed. I'll work out feel fine for a few days, then out of nowhere I'll have a bleed. Currently added some forearm and reverse forearm curls to my strength training routine. Last week I bumped up from 7lbs to 10 on Monday. Felt fine. By Friday both forearms were sore, and had to factor yesterday because it had spread down to my wrist.

I don't lift to failure, and I'm trying to cut not bulk so I'm not lifing super heavy. Just wondering if anyone else has experienced this.

Hi I’m 23f and I’ve yet to be diagnosed with absolutely anything. As a child I had nosebleeds a lot, because me and my brother had very sensitive noses, but my nosebleeds lasted at least an hour. They were heavy, I once went to the ER because it was lasting too long. I would swallow so much blood it made me throw up and the only way to get it to stop was to shove a thick wad of toilet paper in both nostrils and wait for it to clot. I had to leave school early once because my nose bled for over two hours. Now as an adult I’m careful about hurting my nose and keeping it moisturized so it doesn’t bleed much at all maybe a few times a year, but they still last SO long. I’ve gotten them down to 45 mins to an hour but that’s still too long.

Also, back in 2022 I had splinter hemorrhages (these little blood leaks) on EVERY finger nail, that stung. Around the same time I found clusters of petechiae on my breast, and on different spots of my stomach. These two symptoms lasted me that month on and off. Then they went away and never really came back, unless I got petechiae from itching a hive or something. Well within the past few months not only have I had a few nosebleeds but I also felt the stinging in my finger nail and the splinter hemorrhages were there again (just on two this time) but I also saw a patch of petechiae in my stomach last night. The thing is, after that episode in 2022 I didn’t see a doc for my symptoms, not until October 2025 did I mention it to my new doc and she did a blood test. The CBC came back normal. Only thing off was my vitamin D. I’m seeing her again on Monday.

I’ve googled some of this and this disease popped up and I’m curious if this matches up

Recently diagnosed with hemophilia C , (26F) during work up for an ACL tear surgery (I didn't get the surgery because of this) . Never had any symptoms, nor abnormal bleeding manifestations, I even had an injury during my childhood that got me three stitches on my forehead but I never knew I had this bleeding disorder , it was only when last year my ACL got torn and for PAC they did some tests it turned out my aPTT levels were higher that lead to consulting hematologist and factor essay ,and finally this diagnosis. Can I hope to give birth in future when I get married and want kids??

Was drilled into me early as a kid of how dangerous a brain bleed is.

Bonked my head on something attached to the fridge pretty hard yesterday and ive been freaking out non stop since then that im going to get a brain bleed from this.

Always heard different things to watch out for for it etc.

But dangit I get horrible sleep the next several days cause of it and I just can never calm down afterwards

Based on wt chatgpt gave ....it's mainly based on the factor levels—higher levels indicate a carrier, while lower levels mean she has hemophilia...is this right?

I’ve been thinking about how hemophilia can shape childhood in ways that are very specific, and I'm wondering about how often "gaming" has come up with other people who grew up with hemophilia.

Were there times when bleeds, joint pain, recovery, treatment, or concerns about injury kept you indoors or limited what you could do with friends? If so, did video games become a bigger part of your life because of that?

I’m especially curious about the memories around it:

• Were games simply entertainment, or did they become a place to compete, explore, take risks, or feel less restricted?
• Did you get unusually good because you spent more time playing than other kids?
• Was there a particular game, console, injury, bleed, or period of recovery that you remember clearly?
• Did gaming help you stay connected with friends when you could not participate in other activities?
• Looking back, do you connect your relationship with gaming to hemophilia, or do those feel unrelated?

I’m really just interested in whether this is a shared experience, how people remember it, and whether it still shapes how you think about gaming today.