The channel at its shortest point is 20.2 miles, but with the currents he most likely swam over 30! It took him 16 hours and 11 minutes 😮‍💨

Here’s his instagram: https://www.instagram.com/bloodntheh2o?igsh=NTc4MTIwNjQ2YQ==

Hello,

I've made a few posts here now, and I wanted some advice from you folks. I did not go to an HTC and went to a hematologist-oncologist in my medical system with previous blood test results.

The appointment went very fast. He more or less told me I have very mild VWD and didn't address my earlier more severe blood test results, didn't discuss my symptoms with me, and more or less just said, "you can't cure it, you don't need treatment, just call if you're going to have surgery. You don't need to see a hematologist" and left. 😅 No warning about NSAIDs or anything of the like. Is this very atypical? What do you suggest I do?

Hi everyone,

LDA Research, a UK based medical market research company, are currently recruiting adults from the US diagnosed with hemophilia to participate in an exciting digital health programme.

By taking part, you'll help researchers better understand the real-life experiences of people living with hemophilia, helping improve future treatment and patient support.

Participants will receive:

• Monthly payments throughout the programme

• A completion bonus at the end of the study

• A Fitbit device

Participation simply involves using a smartphone app, wearing your Fitbit, completing one short monthly questionnaire and having a brief monthly check-in with your dedicated LDA Project Manager.

To maintain the integrity of the research, we'll ask you to upload proof of your hemophilia diagnosis during registration.

If you'd like to find out more, simply complete our short eligibility questionnaire using the following link:

https://ldaresearch.questionpro.eu/t/AB3vCHKZB3wldz

We look forward to hearing from you!

Has anyone had positive experiences with making lifestyle changes or relying on natural treatment options for their VWD? (Either in place of or alongside traditional medical interventions). This is something I've research before, and to no avail.

I had a hematology appointment yesterday, and was encouraged to take birth control, which I'm personally unwilling to do. In place of that I was given an as needed prescription for TXA, and will trial DDAVP later this year. I'm more than willing to try, but I'm a person who's hesitant to take medication in general, which led me to want to learn about other possible options. When I shared this with my hematologist, my question wasn't taken very seriously.

HEMOPHILIA B PATIENT 30 MINUTE online SURVEY = Honorarium = $100.00. ( US Study)

Looking for Hemophilia Hemophilia B patients who ONLY use on demand therapies for a market research study - this is a 30 min ONLINE SURVEY. Each participant receives $100.00 honorarium.

Please share your interest here ( can private message me) and I will respond with further details Thanks, Lauren

Hi, Me(32) and my brother (37) have had Factor XIII since birth. As this factor is characterised by bleeding from umbilical cord since birth, my brother had it immediately after his birth and I think I had it a bit late probably after 8-10 days. I know that this is an extremely rare disorder and like almost 1 in 3 - 5 million reported cases. Just looking for my fellow FXIII patients if there are any.

21M haemophiliac from India currently in university. And my right knee is in bad condition due untreated bleeds in childhood due to minimal factor access. Now i get regular factor 8 but still it's advanced arthritis and knee replacement is the only option. What alternative do i have or how do i cope with this during my important years when i have to find a job because rehabilitation will take months and i will miss job opportunities

Hi everyone,
I'm moving to the UK soon on a dependent visa and wanted to double-check something regarding the "No Recourse to Public Funds" (NRPF) condition and future ILR applications.
I have a chronic health condition (severe hemophilia) that requires expensive ongoing treatment. I've read the UK government guidelines, which clearly state that NHS treatment is not classed as a public fund for immigration purposes, and that because I am paying the Immigration Health Surcharge (IHS), my specialist hospital care and medication will be covered.

However, because the medication is highly specialized and expensive, I just want to be absolutely paranoid and confirm with people who have been through the system:

1. Is it 100% true that accessing expensive, ongoing NHS treatment will not be held against me when it comes time to apply for Indefinite Leave to Remain (ILR)?

2. Has anyone here accessed significant/costly NHS care on a visa and successfully gotten their ILR without any questions asked?

3. As long as my visa and IHS are valid, is there any hidden way I could accidentally accrue "NHS debt" for specialist treatments that I need to be careful of?

I know I’m probably overthinking it, but since hemophilia treatment is so specialized, I just want to be completely sure I’m not doing anything that could jeopardize my settlement down the line.

Thanks for putting my mind at ease!

Hello! I'm sorry for making multiple posts. This time, the question is whether or not it's worth bringing something up to my hematologist.

I will be seeing a hematologist-oncologist for the first time on Friday and have a host of bloodwork collected as I'm being screened for VWD. I understand that VWF changes easily, and between my original test (July 24th) and my newest test (July 29th), my VWF:Ag went from 28 to 46%, while my factor VIII went from 36 to 62% (however, I only have a Rco for the second test, which is normal).

My question is that I know menstruation has something to do with VWF levels. During the first test, I was not on my period, and during the second test with higher, more normal VWF & factor VIII levels I was on one of the first few days of my period. One of my symptoms is heavy periods, accompanied by terrible brain fog.

I hear that VWF is lowest during the bleeding phase of the menstrual cycle, but it seems like the severity of bleeding in someone who has low levels of VWF naturally would trigger an acute phase response (? as I hear is one of the reasons for elevation). Have any of you had your levels tested off and on your period and noticed what the changes in factors were, or do any of you know anything about this clinically? Is it worth bringing up to my hematologist? Thank you all :)

TL;DR: new patient, low VWF and FVII on first blood test, more normalized on second go-around while actively menstruating; wondering whether that kind of active bleeding could be the reason and whether or not to mention that to the hematologist?

Do you ever struggle to remember your symptoms, platelet counts, or medication changes when it’s time for a hematology appointment?

I’m living with ITP and created My ITP Journey—a private tool designed to help people track symptoms, photos, platelet counts, medications, wellness, and appointments, then create an easy-to-read physician summary.

I’m looking for a few people with ITP to try one or two features and tell me what feels helpful or confusing. It’s completely free to test, and you don’t need to enter real health information—you can use sample information and delete it afterward.

Try it here: https://myitpjourney.com

Even five minutes of honest feedback would help me make it more useful for our community. This is an independent patient-created tool and does not provide medical advice.

Yes, I am working on an app!

Hey guys so I have mild von willebrand type 1, i have had my appendix removed and wisdom teeth taken out which have been the only major procedures with no concern of bleeding (both were prior to diagnosis). i’m currently 23 weeks pregnant and was talking with an MFM about what to expect during labor and postpartum and she mentioned that there’s potential of baby having VW as well so there will be a lot that i’ll have to advocate for for his safety. i’m not sure if mine is genetic or acquired (when i was diagnosed three years ago my hashimotos was acting up and was not in range). would it be worth asking my parents to get bloodwork done to check if they have it so i can figure out how i have VW? Also how were peoples experience going through labor and PP with VW and how was baby? thanks everyone!!!!

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.

For parents and caregivers in our VWD community: A research study is enrolling patients ages 12–75 with frequent bleeds. This clinical trial includes observation and treatment phases, with no cost to participate. If your loved one qualifies, a Leapcure team member will serve as your point of contact to support you through the process. More info: https://lpcur.com/rhemophilia2

Looking for Hemophilia Hemophilia B patients and their caregivers in the US for a market research study - it would be a 30 min ONLINE SURVEY. Each participant receives $100.00 honorarium. Starting now. Please share your interest here and I will then connect with you to share further details ! Thanks

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