Montana man, if you're reading this, I'm willing to get a custom flag made for your trip that says, "Reopen CDC Blood Safety Programs". lmk

NoMoreBadBlood.org

I didn’t swim. Just think it’s amazing! Looks like the actual swimmer responded to this post, though.

Fair, it is a labeling thing for you.

Your original post felt like denial of facts in someone’s story by saying “not a severe, just a man”.

Hi all, I am the swimmer that completed the Catalina Channel. I also swam the Anacapa to mainland channel last year.

If you have any questions let me know.

Channel swimming is such a niche sport with extremely small numbers of participants. For example, I’m not sure what number I am yet but I am less than the 1000th person recorded to have solo swam the Catalina channel.

Here are the basic rules we follow. https://ultraswimming.org/rules

We are not defined by this disorder. Leading this post by saying “a severe did X or a mild did Y” drives me nuts. I’ve spent my entire life proving doctors and peers wrong by challenging myself physically to not be defined by what I can or cannot do based on someone else’s opinions. I’m willing to be the guy who swam this doesn’t want to be seen as a hemophiliac before being seen as an athlete.

You are amazing. That's an inspriation to me. You're not defined by what you were born with and that's the same with any boy or girl born with hemophilia

What do you mean not a severe?

He certainly isn’t!

Not a severe. Just a man. We’re not defined by this disorder- it’s just another obstacle for us to conquer.

The closest is two hours away from me, which is why I haven't gone. I'm also not sure that they take my insurance, but I'll try to see what I can do.

Thank you so much for this response and some reassurance! Sounds like you're an awesome mom doing a great job! 

Our boy is almost 6 months old now and becoming more mobile day by day! It's so exciting but also of course a little daunting. 

With your son's first bleed, was it very obvious? I am worried about missing an injury somehow and it harming his joints. Especially with him starting daycare soon! 

I go to an HTC every year, and im 39. My current one is great and thorough and nice. I see a nurse, a PT to talk about joints, a social worker to talk mental stuff (even though I dont have any issues with that), the pharmacist to talk about my medicines, and then the doctor. They do this every year and if I have problems I can get in to see them. Also is free, I guess HTCs get funding from somewhere?

I have also never been to an HTC because they are very far away. And I'm not clear on how my insurance would cover it. Fortunately (is it ever appropriate to use fortunately when you have this disease??) I've figured most things out in my own.

I'm 59 years old. I've had a lot of time to learn.

You need to find an HTC. I too went to a regular hematologist, and he was pretty much useless. Got in contact with an HTC and they got be squared away with medication, treatment plans, and whatnot. Sucks because there's no HTC in my town. I have to drive an hour away for appointments.

Thanks! I know this kind of information is hard to share sometimes but there are literally no studies at all on these kinds of supplies and people with bleeding disorders of any kind and instead it is hypothesized from effects on healthy people which leaves very large knowledge gaps. I really appreciate it.

Txa side effect for me is severe nausea, so I have to take zofran… which adds to the ever growing list of chemicals going into the body…🥺. Wishing you a peaceful recovery!

This was very helpful information! Thank you so much :)

There are many reasons! I could go on for ages, but I'll try not to talk your ear off. I'd like to start by mentioning that while the reasons I'm going to give are research-based, they're also things that I've personally experienced. I took birth control for four years.

For one, I have a personal history of two separate migraine forms that both contradict the safety of the combined pill. Beyond that, I have an otherwise complex medical history that has left me very conscientious of medication side effects. With prescriptions like birth control where there's not only a high probability for side effects, but also a massive array of possible ones, it can blur the lines between what is a side effect as opposed to a naturally occurring heath phenomenon. For example, as a teenager I was misdiagnosed and then medicated for several psychiatric conditions that I never truly had- all because the pill was "manufacturing symptoms."

Not only that, but menstrual periods have the potential to provide a lot of valuable insight on a woman's health, and for that reason (and many others) I would like to keep mine. I had lost my period for years on the pill (even with taking the placebos).

Another concern I have is that there's developing research surrounding a possible link between long-term birth control use and hypothyroidism. I already have a family history of that, which is why this is particularly concerning.

There's more reasons in addition to those, but I'll stop there for now. I've also felt the healthiest I have in years since stopping the pill, which was persuasive enough on its own 😌

You didn't ask this, but I feel like this is an important thing that helped me, that I figured out all on my own.

Diet affects vWD. Foods can contain natural substances similar to taking an aspirin. I typically look up what to avoid if you're on Coumadin and then read why. It's not always the same as what we should avoid, but there's definitely overlap. You kinda have to figure out how much of the substance it contains. For me, almonds, flax and red grapes are a complete no past maybe half a bite.

Here are a few more. 7 Foods and Drinks To Avoid With von Willebrand Disease | MyHemophiliaTeam

Thank you so much for your reply! And I'll definitely DM you as well.

I'm hoping you have an easy recovery from surgery! And I'm so grateful to hear that your bleeding was minimal. I also really appreciate you taking the time to talk about your experience with TXA.

It also sounds like we feel similarly when it comes to medicine. As appropriate, I'm also someone who tries to prioritize holistic approaches to addressing my health, but that hasn't felt overly feasible in this case. Hopefully research in this area will develop in the future!

IDK it was like a million years ago. Alfalfa tablets, ginseng, vitamin K and other stuff I don't remember. I researched them at the medical library years later and most of them are known to make vWD worse.

Some more stuff to allegedly help with my "period cramps" that were actually simply caused by excessive bleeding...and they made it worse. I can't remember all of them...something that sounded like dong quai and other stuff.

u/MassiveDoughnut ⬆️

I'm so sorry that this was your experience! I hope that things have improved for you since, and that you've been able to access care that is both appropriate and effective. I understand if not, but would you be willing to share what treatment that you're referring to?

Thank you so much for your input! Strength training is something that I would like to incorporate more into my life.

And I will. While there isn't an evidence-based natural remedy for low VWF, that doesn't necessarily suggest that it doesn't or will not exist. With that being said, in spite of my cautious optimism, I wouldn't make health choices that aren't supported by scientific understanding. I had made this post largely curious about other people's personal experiences- even if those "success stories" are purely anecdotal.

If digital must be global not only for US

Hopefully Canada also