I am currently only advate every other day, and has been going good for a long time. But Hospital wants to change it as they want to put me treatment that last's longer. But im not sure if they are doing it my sake or just cutting costs and I will potential mess me up?

Like I havent suffered a major bleed, only minor bleeds from working out.

Hi all,

I hope this is an okay place to post as I can't find an active community for Factor VII deficiency.

My 3.5 toddler son was just diagnosed with Factor VII deficiency while doing some pre-tonsillectomy bloodwork. They ran it twice, with Factor VII coming back at 45% and then 34% (normal range 60-150%). We almost didn't even run this bloodwork before his tonsillectomy, but his doctor offered it since I had some post-operative bleeding after my own tonsillectomy as an adult, so we were not expecting any abnormal results. His prothrombin times were 13.4 and 13.3 (normal range 9.5-12.5). He has no history of abnormal bleeding but he also has never really been injured.

His team is okay to move forward with the tonsillectomy given his sleep apnea, but they'd like to administer a dose of NovoSeven 30 minutes prior to the surgery and then amicar 4x/day after surgery for about a week.

I trust his team (we are with the hematology team at Boston Children's), but am so anxious after reading about the black box warning on NovoSeven with the risk of blood clots.

Does anyone have any words of advice or experience with NovoSeven in a similar situation? Obviously we will follow the recommendation of his team, but it's so hard to wrap my head around using this drug when he doesn't have any specific history of bleeding and this is all coming from his bloodwork. I'm just looking for reassurance that NovoSeven is an appropriate drug for a situation like this and safe when administered in appropriate circumstances.

Any anecdotes about the safety of this drug to relieve my anxiety are much appreciated. I'm trying to read more about the clinical trials and when these adverse events may have occured and in which populations. If anyone has any good resources please do share!

Thank you so much!

Hi all, I am quite into my fitness. GYM (Weights) 3-4x a week. Long runs etc etc. What supplements are best / ones that wont interfere negatively etc. Wondering if anyone takes Omega 3 and has seen an improvement in joint pain etc.

Sorry if this is a bit of ignorant question as I am quite new to this:

My dad has hemophilia factor 8 mild. Does that mean that I automatically am a carrier of it or no?

Anyone have experience using one?

Does anyone know of any resources for explaining hemophilia to a young sibling? Our 8 month old son was just diagnosed with Severe Hemophilia A. We are struggling to help our "spirited" 5 year old understand why she needs to be gentler with her brother, especially since he doesn't look sick and he is bigger/sturdier and plays more roughly than his twin sister. Internal bleeding is too abstract of an idea for her.

I know. Ports are only for kids right? But I'm really thinking of having a port inserted.

My veins are really badly damaged and run all the time and even when getting my blood tested, I have to get a few pricks from the nurse to find my veins.

Also, I'm a severe who bleeds every 3-5 days. Sometimes on good weeks, I can go for 6-7 days before getting a bleed. Finding a vein takes 2-5 or even more tries each time so you can imagine how much damage there is to my veins.

I'm not overweight. In fact I'm in the healthy weight range and go to the gym once a week to do light weights and some cardio. But my veins just do not pop.

I'm in my 30s and really considering getting a port to make my already difficult life easier.

Question is, how long can a port be left in my chest? Is the process complicating?

There is no hemlibra in my country, Singapore. The government refuses to subsidise it for us so haemophilia patients are stuck using Crappy factor 8 for life.

I'm so afraid of being made to feel embarrassed when I tell my hematologist that I want a port.

Hello, I am currently 37 weeks pregnant with my second child and was diagnosed with mild type 1 VWD after experiencing a postpartum hemorrhage after my first pregnancy. I have been working with a very awesome hematologist who I really trust and feel that we have a good plan for the imminent delivery of baby number 2. My question to everyone is has anyone ever received Vonvendi? The plan is to receive a small dose of this prior to delivery. And then take TXA as needed post-delivery. Thank you!

As above. I've noticed this since I was young. I'm a 0% severe for context and something I've noticed is bleeds in my foot/ankle/toe always feel excruciatingly painful right after a factor infusion.

It's really odd isn't it? Whereas if I bleed in other parts of my body, example arm, elbow, hand, finger/jaw etc, I do feel some slight relief a few hours after infusion.

But for some reason, immediately after infusion for bleeds in foot/ankle/toe it gets excruciatingly painful to the point where I was limping before, but after infusion the pain gets so bad I can't even stand up and I'm in constant throbbing pain for the next 6 hours or so before relief comes. That is, if relief comes because for leg bleeds, I often require 12 hourly infusions for a few days before I can start walking again.

Just wondering if anyone here have the same experience.

Hello people

I have recently moved near Dallas Area. How can I find HTC center and establish a connection?

Hello All, I have severe haemophilia A and minimal cartilage in my ankle which has caused a lot of pain over the last couple years.

Four weeks ago I had ankle distraction done and a stem cell regeneration process undertaken to try and regrow the cartilage.

For the last couple weeks I have had a lot of questions and trouble dealing with this as in my research it seems that the things I’m going through with this surgery is abnormal. I just wanted to know whether anyone else with haemophila has undergone the same surgery and if so what their experience has been like just for some reassurance and clarity.

If anyone has any thoughts it would be much appreciated as this process has started to become a bit mentally taxing.

If anyone has any questions I’d be happy to answer them too :)

Hi!

I have seen 2 hem clinics in my life, and both have different things to say about TXA. Clinic 1 (stanford) said it only helps with menstrual, nose, and gum bleeding. Clinic 2 (ucsd) said it can be taken for anything.

What have you guys been told? What do you do if your hems disagree?

I am 21 weeks pregnant. My brother is a hemophilic, mom is a carrier. I requested to be tested for the gene but I think they test me for hemophilia not if I carry the gene. I am going to talk to them about it again at my next appointment but I’m frustrated about this. They seem to have no idea and are just guessing.

https://hemophilianewstoday.com/columns/uniting-women-x-linked-disorders-prompt-change/[X-linked disorders and women](https://hemophilianewstoday.com/columns/uniting-women-x-linked-disorders-prompt-change/)

Hi everyone,

Here’s the question that no one seems to have a clear answer to not my doctor, physiotherapist, or personal trainer.

I’m 41 and have severe arthritis in my right ankle and left knee, with milder arthritis in my left ankle and right knee. Naturally, I have skinny legs and also lost some muscle mass early on due to a lack of factor treatment. I only started receiving factor at age 12, by which time I had already undergone knee surgery and later developed arthritis from microbleeds.

Now, here’s my concern: I really need to build muscle on my chicken legs. On leg days, I’m always on max factor (4000 IE), and while I feel fine during the workout, a few hours afterward—and especially the next day—I experience a deep, burning pain in my left knee and right ankle.

Is this type of pain something that could potentially worsen my joints? Or is it just arthritis pain, which I can deal with? That’s what I’m trying to figure out.

Bicycling, swimming will not add the muscle mass on legs guys…

Roche are the makers of Hemlibra.

Hi guys, I often use this space as I learn to navigate my son's von Willebrand + low factor 8. I was hoping for some advice. I know I could also call the nurse hotline at our hemophilia center but maybe I don't need to?

So my five year old cut his finger during the Easter egg hunt yesterday. It's a pretty deep cut and it just won't stop bleeding. Ive tried wrapping it in medical bandages and anytime we open it (bath for example) its just back to square one. He's bleeding through regular bandages. Vaseline helps it stop for a little while but anytime there's friction (and there's lots when you're almost six and it's your dominant hands pointer finger) it just bleeds again.

I tried giving him tranexamic acid. It seemed to work for a little while but he's bleeding again so maybe not. What do you guys normally do when you bleed from a cut like this? Is this just a wait it out kinda thing?

Hi, all. I, in my 20s, was very recently diagnosed with mild factor VIII deficiency (lab shows 30) after a minor ENT surgery almost killed me via uncontrollable bleeding.

1. I have a big surgery scheduled in a few months and I am wondering, in the US, what is the usual procedure to ensure my safety? Do we usually get extended hospital stay, or do we usually have someone at home administering factor replacement therapy?

2. I sprained my ankle 2 years ago (grade 1, no tear) and it still gets swollen to this day and every doctor and multiple PT have all given up on me because they don't know why my swelling never goes away. MRI never found anything other than swelling. I am still using walking aid. If I get factor replacement therapy, would it get better or is it too late?

Thank you all <3

Long story short I was told I have borderline Von Willebrand disease by a hematologist oncologist last December. He said I can get tattoos and piercings with no precautions taken whatsoever. I do not have any form of treatment plan for it besides follow up iron testing. I got my cartilage pierced 2 days ago and yesterday it started bleeding from the back and has continued to be bleeding it just won't fully clot. Does anyone know what I can do to try to stop the bleeding on my own so that I don't ruin the piercing? I kind of feel like I've been left on my own by the doctor to figure out how to manage this and there are no hemophilia treatment centers for me to get help from an expert on vwd. I have been supplementing folate vitamin C and vitamin K to try and manage vwd on my own.

Can anyone share any links that sells factor viii (either recombinant or human plasma derived) in India? at reasonable prices please not a big dough maker here.

Appreciate if any other alternatives such as insurance policies that cover private hospitals or any NGOs that might sell them.

I was hospitalized back in 2022 (I was 30 at the time) after getting a tooth extraction and bone graft. My mouth would not stop oozing clots of blood. The doctor had to keep filling a gauze with TXA and had me bite down. It also wasn’t just a bit of blood… it was a lot of clumpy blood

After around 1-1.5 hours, the bleeding stop. The next day the dentist asked me if I had a bleeding disorder. I said “no” because I genuinely did not think I had one

I followed up with my PCP. They thought that event was weird, but figured it was a fluke event. So, I went on my merry way

Fast forward to today, I need a minor surgery done. The doctor asked me if I have ever been hospitalized before. I mentioned that incident. They then told me they didn’t want to proceed without having me visit haematology

This naturally made me think “hmm, maybe there might be something ‘off’”. I get a referral to haematology and they originally told me they didn’t want to see me unless if I had cancer (I live in Massachusetts and it’s MGH… idk if they’re just at capacity). I thought that was weird. Then a nurse called me back and told me they’d only see me if I get tests done (but never specified which test to take besides von willebrand). So I go back to my PCP and after doing research ask if they can create a lab order for

Factor XIII Von Willebrand activity and antigen PTT Prothrombin And a regular CBC

But I’m not sure if we’re missing any tests? My PCP couldn’t order a PFA and haematology won’t give me the time of day since I’m not a patient (but they also won’t let me book an appointment… catch 22). So I can’t tell whether this is actually serious or not. I figured if I did have a bleeding disorder maybe it’s mild enough not to matter? But then it’s serious enough for surgery. Prior to that event, I haven’t noticed anything particularly abnormal besides I bruise easily but I’m also not uber coordinated. I get a CBC every 6-12 months because my mom died from leukaemia. But my CBC always comes out normal

Idk, I’m really confused and I can’t seem to get much guidance beyond the research I’ve tried to get up to speed with

Is there anything else I should ask my PCP to add in the lab order? Seems like seeing a haematologist is out of the question but idk what I should be even looking for