This is an interesting one, so up to this point I’ve kinda followed a narrower path in pushing boundaries with my body and severe hemophilia A in my life. I’ve never got tattoos or pierced until this year, now I have both. I don’t want to discredit the limits I’ve pushed my body to some amazing limits, I’ve ridden a bicycle from San Francisco to San Diego multiple times, it takes a week to do and is over 600miles. I raced mountain bikes in my early 20s and was a very competitive swimmer from 8 to 18 years old before my elbow started holding me back. I’m aware of the life I have been able to live, I see and hear all that have not been able to have this “kind of life experience”.

I had some life events in the last year that got me questioning what am I waiting for in life as my “4000 weeks” tick off. I can still engage in this, just maybe not to really extreme levels. Rewind: It was Wild West of the internet in the late 90s to early 2000s image directory websites(IYKYK), I discovered “extreme” body mods and was totally fascinated by it but never thought could really participate, so I packed that way…. to explode in a mid life crisis… lol.

So this calendar year I’ve gotten pierced 7 times(one rejected), so of the 6 I currently have, only 2 are “generally” visible… Not sure where it will go, I’ve only been given direction by my SO not to F$€K up my face, which I will respect.

In this weird way I have found the experience of different body piercings integrating to the mental mastery of my body and the intimate relationship with needles. My piercer, which I only work with one, probably thinks im interesting… we are both learning from each other. Yes, I use an APP piercer, with lots of training.

The one piercing that rejected, I recently had re-pierced and there was a lot of scare tissue and the feeling of the needle moving through that scare tissue was intense but so familiar. It reminded me so much of that period of time after you start a new routine infusion site and the scar tissue builds and starts really hurting before the nerve ending dies and don’t feel it at all anymore.

I just wanted to share as don’t really have many in my daily life that can relate.

TLDR: Midlife crisis, piercings, new life perspectives.

As always, talk to your care team…

Checking if cholesterol drugs statins would increase bleeding time for people with severe bleeding disorder.

My son has Severe Hemophilia A. He has been on Hemlibra since birth, with only having to receive factor three times. He knows he gets a sub q shot every other week, but has never asked why. We keep thinking he will ask and the conversation will happen naturally, but it hasn’t. I think he has some idea that the shot is linked to blood because he tends to panic a little if we ever say he has a cut and is bleeding. We want to approach this in the best way. So, I’m just here to ask for any advice on the best way and approach to telling him.

Hello, I am 22 Years old with Hemophilia A 2-5%. I am not on Prophylaxis and had never bigger problems. Only one Hip Joint bleeding over 10 years ago and a muscle bleed 3 years ago. Since 3 days i have a light pain in my hip where i had the bleeding when i was younger. I started going to the gym 3 weeks ago and also i do boxing (only cardio no sparring or real fights) for about 1 year. How do i know if this is a bleed or just like a overworked muscle or something else? When i move it doesnt get better or worse. I remember that the hip bleed was very painful, but can joint bleeds also be only little painful? And how fast do they develope?

Also i read her that many with my % have way more problems than me, am I a exception?

Wish you all a nice day :)

UPDATE:

Went to the hospital, got factor injected but in the sonography they saw no bleed!

My doctor recently told me about the availability of this treatment option, I'm interested as I used to jog/run a few times a week but can't now due to what I think might be sinovitis so I wanted to find out from anyone that's done the procedure before.

How did it go? Did you experience less bleeds in the affected joint and how long it take for you to recover from the procedure? Would you recommend it?

Hi guys, severe hemophilia B here, from Perú, most known as llama land. Well, as the tittle said, my doctors here in Perú are using hyaluronic acid, i only have a artropathy on my left knee, and a little of synovithis in my right ankle (pain sometimes but not that much). The knee is my Major problem, i have been inyected 3 times hyaluronic acid and in the first three months It works well but after that the effects starts decreasing. ¿Does anyone have tried this or any other treatment? Once one doctor told me something about plasma, my principal Doctor said not try It because It might not be secure. I go the gym and lift hard on the upon body but in legs i go reallt soft but sometimes i bleed, It means that i i Am going too strong? To let you know i have a muscle atrophy in my left knee due to my artropathy. And pain, i use celexocib here in Perú, It helps but i get usted to it. I also use gel compress a lot(ice). It would be great to here some advice from you. Edit: i apply my factor 2500 ui before going to the gym// in total i apply 5000 ui per week and i weight 65 kg.

Hey, i have Hemo B severe with inhibitors, I like to know some more details about Concizumab, since it’s now allowed to be in market @ Europe. Can I do operations on it?

I’m 27yo with knee arthritis and both elbows also.

Just needed some input guys ive severe Hemophilia A but nowadays my health aint that bad. Im working out and all was wondering if its safe for me to have creatine

Is there anyone in the chaos that needs factor and can't get it? I have some close to expiration and could get it up there if needed.

Has anyone been diagnosed as acquired factor V III while previously diagnosed as factor V? I was on Hemlibra until I got a couple blood clots, now I am back on blood thinners. I feel like I’m walking a tightrope waiting on death from a clot or death from a bleed.

I was diagnosed with Von Willebrands at a year old (22F) with Type A after my mom went in to labor with me, who is Type O. When the international ristocetin levels were changed a few years ago, I was told my levels were borderline and I had “heavy bleeding” with no official diagnosis, but always treated any doctors appointments, surgeries, or medications the same as having VW. My hematologist began testing for other bleeding disorders like Factor 11, but I haven’t been able to receive any results as I’m currently in my last year of college away from home, so testing and diagnosing has been paused. I was wondering if anyone else has had this experience or could offer advice. I figured I would post in this forum, as there isn’t a real reddit forum for Von Willebrands, but the experiences are shared and sometimes interchangeable. Just curious to know if anyone else has had an experience with a change in their diagnosis.

Any advice?

She has 3 siblings and they’re all females

I have severe haemophilia B and require prophylaxis injections weekly. My doctors have been telling me for ages that I need to be doing them myself (my mum currently does them as I am still a kid and live at home.) I know how to do them because I’ve been having them my whole life, but I’m really struggling to overcome the fear of doing them myself.

I would really appreciate any tips or advice that can help me overcome this fear.

Anyone have a method? I tend to try to calculate in my mind, but it’s kinda annoying. Or does your infusion logging app have a tool like that?

For reference, I infuse multiple times weekly for prophy, but not based on the days of the week. Usually I have a general idea of when my dose is due, but I log and check the infusion logging app, which shows me the day/time and then I think about how many half lifes have happened since then.

I’m a 25yo, severe Hemophilia B

Over the years, it’s caused significant orthopedic damage—both arm joints, my left knee, and both ankle joints suffer from severe osteoarthritis. This has severely limited my mobility.

In India, access to factor infusions has been minimal, only available in emergencies. Hemophilia itself no longer bothers me as much as the joint damage and resulting lifestyle restrictions.

I’m considering a total knee replacement, as my left knee and ankles are the worst affected. However, doctors have told me that nothing can be done for the ankles besides minor surgeries like GFC injections, which I’ve been getting for a year with some success, though it’s costly.

My question is—should I go for the knee replacement surgery, or start adjusting to a life with these limitations, as that seems inevitable?

hey I got a question is it possible for me a mild to moderate hemophilia to do mma I want to learn jujitsu and muay tahi or kickboxing is it possible or no

I have Hemophilia B and am not sure of the severity level because I was diagnosed years ago as a kid and if they told my parents they never told me however they said it was mild. I do not get injured quicker than others and I will heal like everyone but the clot won't hold and it's like I reinjure myself.

I have not been to the dentist in years and need to get dental work done and am sure I will need some teeth pulled and need some dental implants and my question is what is the process for a hemophiliac needing dental work?

This is a genetic disorder and lots of issues come with it and all of us are fully aware. Let’s not digging into the bad part but discuss about the positive sides of it so maybe some of us can get the benefit (US) to offset the downsides:

• Insurance out of pocket maxed out after 1st order of the medication each year. This leads to free dr visit, free xrays, etc.

• learn to appreciate and take care of health at a young age.

• Qualified for some disability benefits that depend on which state you’re at.

Hello everyone!

I’m considering starting a TikTok account that would focus on hemophilia, particularly about staying healthy and fit while managing the condition. My goal would be to share fitness tips, lifestyle advice, and personal experiences that could help others with hemophilia live a more active, balanced life.

Before I start, I’d love to hear your thoughts! Do you think this kind of TikTok account would be helpful? What content would you want to see? And are there other ideas you’d suggest I explore to make the account as valuable as possible for the hemophilia community?

I appreciate any feedback and suggestions!

So I have haemophilia A and in my part of the world, hemlibra is not a common way of treatment and hence not that much available. Information deficit follows.

I'm thinking about trying it out.

Can anyone help me understand:

1. what exactly does it do and
2. How different it is from normal factor 8 infusion and
3. what changes will I've in my lifestyle and
4. how will it improve my lifestyle?

Does anyone of you happen to have Hemophila A? I am diagnosed with Severe Hemophilia A. Yesterday, I undergone Bethesda Assay for Factor VIII inhibitors and I just got the results today. I am having anxiety right now for I don’t know how to interpret the results. Can anybody enlighten me about this? Is there someone experiencing Hemophilia just like me? 🫠

Hi!

I was curious, I saw an earlier post on this subject from about a year ago and people said if you shoot up before you’ll be fine, does that mean I can continue my Hemlibra dosing before and I’ll be fine or would I need clotting factor like afstyla?

Some background: My mother has antiphospholipid antibody syndrome. To start birth control my doctors wanted to rule out the antibodies for this disorder in me before prescribing. After a year of repeat testing it does not look like I have these antibodies, but I do have prolonged screens with negative confirmatory tests indicating a possible factor deficiency. I'm also 50% ashkenazi jew. I do have dental bleeding with brushing and flossing regularly and just thought u wasn't taking good enough care of my gums. I'm female and my periods can be pretty heavy. My thoughts, though I know I'm not a doctor and cannot self-diagnose, is that I may have hemophilia C. How does one go about being tested for factor deficiencies?

I’m coming to terms with being told in the last year and half that I have bleeding disorder, and am a female. This comes after a few years figuring out other blood issues , such as that I live on reticulocytes. My red blood cells live only about 21 days, while normal people’s live like 120 days.
I go to a hemophilia clinic about once a year, and must be cleared by them prior to any surgery. Was told prior to surgery that need to join the state organization and get a medic alert bracelet free of charge. Surgery earlier this year required two units of platelets day of and txa orally prior and post op. (Makes me 🤢) about to have another in 2 weeks. So over the summer have had more and more deep bruises without falls. Bigger in my left ankle and in breasts. Got crazy spreading bruise after needle electrode was inserted in my arm that lasted 3 weeks, started about size of a nickel at time of withdrawal, but ended up about 6 inches long and 4 inches wide. While seeing pcp, I asked about the pain and being tired from these dark purple almost black bruises. I asked about how long the one on arm is lasting. She looked at me and laughed then said, “well your bracelet says you have bleeding disorder, what do you expect? “

I do not understand a lot of the abbreviations, and am clearly clueless on day to day life of people who have hemophilia/ bleeding disorders. I guess I am asking if these are the things I should have been asking about or documenting?

Or is it supposed to be understood that because it is in my records that I just accept and suffer? I don’t seem to have luck finding other women with issues like mine to ask.

Do not know what sort of disorder I have, only that low platelets and platelet disfunction. Am anemic also.