can u get tested withiut blood tests?

Hi there! I am currently 10 days from my due date and was given a birthing plan from my doctors to make sure baby and I are safe. They are recommending a scheduled induction around 39+ closer to 40. I would come in to the hospital two days priors, speak to a hematologist and anesthesiologist and make sure to get my Factor levels to a higher percentage.

Keep in mind, I am having a daughter and have no history of excessive bleeding.

I am struggling emotionally and mentally because my partners family is very natural about everything and have told me not to be induced because of how much pain and stress it will put on me and the baby. Along with the fact that it will most likely become a C-section (which I really don’t want and my doctors do not want either with the risk of more bleeding) i know it’s its out of love, but it has made me and my partner so fearful and anxious.

Also note, my mother (also a carrier) had three children with little to no issues and simply used the DDVP and was good! In fact she got three c sections and her doctors were fine. So that makes me wonder why for me it’s become this huge plan I have to choose because my doctor also mentioned if I go into spontaneous labor, they have a good plan to keep me safe and from bleeding.

I know the simple answer would be listening to my doctor, which I mostly likely will, but i just feel scared and confused. Trying to research as much as I can but haven’t found a thread about a scheduled induction. Just some advice overall and anything on inductions would be so helpful!

Thank you so much <3

Hey folks. Does anyone have any experience with the few products out there for stopping nosebleeds? I have good luck when I have my factor 8 to infuse but there are times when I have a particularly problematic nosebleed for days and in the case of this week, my insurance changed and I had to switch to a different specialty pharmacy and I’ve been out of factor 8. I’ve had frequent bad nosebleeds for 7 days now. Walmart and CVS in my town have two different insertable products. Just looking for any experience whether the products out there are worth trying or not.

Is there any hope that the long half life factor products will ever be available as generic and priced accordingly? I’ve done some googling, but there is nothing regarding this.

So a few year ago after some surgery I was referred to a hematologist because my platelet clot time was higher then normal. Turns out I have mild hemophilia. It's very mild my levels are usually around 45-49 %. My dad has always had trouble clotting and I got a genetic test done to confirm I have a gene for hemophilia A. I don't need to take treatment for it, only if I get hurt myself badly and there's a risk of a bleed. Then I have to give myself an injection, which I haven't had to do.

Throughout my entire life I've struggled with achy limbs especially after an active day. It's not every day but it's enough to control my life. It's a pain I can't pinpoint an exact spot just a deep very uncomfortable achyness. Extremely hot baths help with the pain. I've had X-rays done years ago before the hemophilia diagnosis to see if I had arthritis. But all it showed was some bone spurs, but they weren't even located in the joints just on the outside. I'm just wondering if this description is similar to hemophilia pain? Is this possibly what I've been suffering from this whole time?

I'm 30M with Haemophilia B Severe. Recently I noticed that I'm facing frequent and quick internal bleeds in my joints whenever I'm on antibiotics course (of 5 days usually) for common issues like cold & cough, fever or diarrhea.

I'm not sure if it's coincidence or not. My doctor said antibiotics aren't the culprit.

Just wanted to check if anyone experiencing the same.

By the way antibiotics I'm talking about Ofloxacin + Ornidazole, Levofloxacin, Amoxicillin, Etc...

Does anyone have any experience with acquiring an inhibitor? I’ve been diagnosed with Factor V Deficiency since I was 4 or 5 and haven’t had major issues outside of nosebleeds and excessive menstrual bleeding until my spleen spontaneously ruptured a few years ago when I was 23 leading to a whole host of issues. The go to treatment for me was always fresh frozen plasma, and they were giving me mass amounts of this when my spleen ruptured to keep my factor V levels up, until it stopped helping any of the bleeding and I learned that I acquired a factor V inhibitor and could no longer use fresh frozen plasma. I’m now on FEIBA factor replacement twice weekly and just wondering if anyone else has an experience similar to this or any experience with acquiring an inhibitor? I still don’t exactly understand what happened to cause all of this and it has made my life significantly more stressful. TIA!

After roughly a year of trying to get on Altuviiio, I finally managed to get a free trial through a program that Sanofi provides, with the help of my HTC. I’m also an AKA amputee, and have been for almost 10 years. I still experience neuropathy, from time to time, which plays a part in this story. Anyway, the night after my first dose of Altiviiio (around 6000IU), I woke up in the middle of the night with intense neuropathy that kept me up for almost two hours. I didn’t find anything online that this might be a side effect, and I’m wondering if anyone has had anything the same or similar happen to them when starting Altiviiio.

(For Hemophilia A only)

I know testing exists but I don’t think I’ve ever gotten it, unless I got it when I was a child (I’ll have to ask my mom).

Does anyone know their specific genetic mutation?

Just curious!

Last year i got my wisdom teeth out and the bleeding would not stop. My oral surgeon referred me to a hematologist and apparently I have Hemophilia type A with a factor 8 level less than 1%. I have no idea how I didn’t find out earlier in life especially because i’ve been in car accidents, had several broken bones and get injured regularly. As far as I know severe cases can not survive without medication and i’ve been unmedicated my whole life. The surgery I had and diagnosis of hemophilia was a year ago and i’m still completely unmedicated. Anyone else have a similar experience? I don’t have any bleeding issues other than the occasional nose bleed during season changes.

3 weeks ago, i did my usual weekly hemlibra shot and it hurt needed up leaving a huge bruise and a tough spot that felt like an almond under my skin. it still hasn’t fully gone away. has anyone else experienced this?

Long story short, I had two different doctors basically commit medical negligence.

My prior hematologist does not live in my city. I had to fly in for his appointments. Once he made the decision to retire this upcoming January, he totally ignored my care and approved a procedure that has been very detrimental to my health because he's mentally checked out.

I went to a vein specialist to get a procedure done for the reflux in my legs. My former hematologist signed off on the procedure and noted that I should not change the way that I was taking my medication. I'm on Amicar 1000 mg four times a day.

The plan for the reflex was to do one leg and then a couple weeks later do the other leg. The first leg was done on October 15th (-ish).

On the follow-up they found out I had two DVTs in my ankle, but failed to notify me until 5+ weeks after the procedure. I had an ultrasound done about a week after the procedure. On October 23rd, the doctor read my ultrasound and it was noted that I had two DVTs, including one of the major veins in my ankle. Instead of notifying me, especially since he knew from the very beginning but I had a platelet and bleeding disorder, that doctor's office did nothing to notify me about the DVTs. They also did not contact my primary care physician to let them know. I did not find out about the DVTs until my follow-up just this past Friday.

I recently found out about the one hematologist in my city who will take adults with bleeding/platelet disorders that they did not diagnose prior. I had my first appointment with him early last week.

As mentioned, as a result of the procedure,I currently have two DVTs in my ankle that have been there for at least a month. I just found out about them on Friday and was able to get into the new local hematologist yesterday at 5:00 p.m. Obviously, he is highly concerned that I've been walking around with this for a month, especially given my platelet and bleeding disorders. He has been extremely diligent and I need to go today in a few hours for a stat ultrasound and some stat blood work. From there, he will decide what course of action to take. As of right now, he had me discontinue the Amicar until we can get current numbers on the size and location of the blood clots right now and what my clotting factors are looking like right now.

I know my experience will be different than the average person on this board because I am not a traditional hemophiliac. I spontaneously developed my bleeding/platelet disorder in my mid-forties. My platelet disorder is alpha granual deficiency but as a result of that, I am also mild low in Factor VIII (35%) and Fibrinogen.

I'm not looking for medical advice. I trust that this new hematologist will watch me like a hawk as we try to solve this issue.

I'm just looking to see if anybody has been through a similar situation and what it was like, was it hard to get the clots resolved. I'm just basically looking for some insight if other people have dealt with having blood clots while living with a bleeding or platelet issues and just want to hear other people's experiences. There's a very good chance my specific treatment will look different from other people's treatments just because of the added complication of my platelets not working properly. I just really want to hear from people on here that had blood clots and things worked out and they are ok now.

Salut tout le monde,

Je me demandais si d’autres personnes ici vivent avec une déficience en facteur XI (hémophilie C). C’est une condition assez rare, et j’ai lu qu’elle est plus fréquente dans certaines populations, notamment chez les personnes d’origine juive ashkénaze, mais elle peut toucher des gens d’autres origines aussi.

Je suis curieux(se) de savoir si vous avez aussi ce trouble, comment vous le vivez au quotidien, et surtout, de quelle origine vous êtes. Y a-t-il des expériences communes selon les origines culturelles ou géographiques ?

Partageons nos expériences pour mieux comprendre cette maladie rare et se soutenir !

Hâte de vous lire. 😊

Hey everyone

I'm a 20 y/o college student, and I've been learning about the challenges people with hemophilia face in class, especially around joint bleeds and long-term joint health. I know joint bleeds can be silent bleeds, and when they go unnoticed, they can cause significant pain/damage which can lead to arthritis and mobility issues. I'm trying to better understand how this problem could be addressed.

What would make it easier for you to manage or monitor joint health?

Any specific tools you wish existed to detect bleeds earlier?

Are there any ways you try to monitor your joints as of now?

Any feedback you'd be willing to share would be helpful. DM me if you'd rather explain over the phone. Thanks guys

My son, 14 months, is on his third ear infection in 2 months. My older kiddo went through the same thing and getting ear tubes was a lifesaver, but she doesn’t have hemophilia. For her, the surgery took 10 minutes and she was 100% the next day. Has anyone gotten routine ear tube surgery with severe hemophilia? What was the recovery like? Any additional risks? I’ll add that my son is on monthly Hemlibra prophylaxis and we have ample factor supply. Thanks!

Just overall insanely dizzy and nauseated. I can't get out of bed ☠️

I'm Indian and so we eats lots of spices and stuff. In one of the recent posts I found that you can't eat some things like Chia seeds, Omega 3, turmeric, Garlic etc. I'm not sure, plz help me.

Recently, I was free of any bleeding for 2 months, but started getting it again, I think it might be due to some food which helped me, and something which caused the bleeding again.

Hello, my son has wanted to become a pilot since he was little but is a moderate haemophiliac. We asked an aeronautical doctor who told us that he had to take the exams because each case is different. Do you know any haemophiliac pilots?

I have severe bleeding disorder and getting omega 3 through wild fish causes bleeding so i switched to being vegetarian.

Do any brand of omega 3 cause no extra bleeding?I have elevated crp levels and want to check if anyone is having fish oil supplements?

Hi everyone. I had heavy menstrual my whole life dealing with VWD. Sometimes would last 7 months. Mirena iud helped so for a couple years it was controlled. My boyfriend and I are trying for a baby but now that the iud is out ive been bleeding for 5 weeks. Has anyone else experienced this and if so how did you get your period under control to be able to ovulation and become pregnant?

Any Severe A’s get regular kidney bleeds? I’ve been getting one two a year for a decade now. The breeding is less severe on hemlibra—no more huge clots, dark red pee—but I’m still getting them. Difficult to shake too. I’ll treat every other day for a week and it still won’t always resolve. What’s your experience.

Last week I went in for an ankle arthroscopy, though I was told my my surgeon that they may have to fully open the ankle instead depending on how it looked when they got the camera in…

Which they ended up having to do(ofcourse 😅). The surgeon said there was a lot of scar tissue to remove and the bone fragments were too large to remove via arthroscopy. Good news is he said he managed to remove a lot of stuff.

I was wondering if anyone here has been through similar and what their recovery experience was like and how much of a benefit the procedure ultimately gave them? I know it’s very individual but I’m curious (and bored stuck at home with my foot up!)

I've been a Hemophiliac, diagnosed 3 months old. Severe less than 1%. I'm 42 years old and my favorite color is egg yolk. One of those things is wrong.

Treatment has gotten so much better. Heck even in the last 10 years. It's been great. I use to have to infuse intravenously every other day (like 30ml) Now I infuse twice a month in the stomach tissue (2.0ml). I can't wait to see what another ten years brings. Anyway, lets hear everyone's stats. I'm just looking for people I can talk to about this damn disease. Or just to say hi now and then.

Cheers

Jeremy

I’m a mild 10% fvIii. So I’ve been without care for about 15 years. Luckily in that time I haven’t needed factor although a time or two it woulda helped. Recently I found out I need to have a molar extracted. I know from past experience not to mess with bleeding and your mouth so I went to re establish care. I went in with goals of getting factor for the molar and to establish on hand supply. The doc was great. What I do for a living is fairly physical and sometimes risky. The very last apt I was at my old dr questioned my career choice and advised against it. For me it wasn’t negotiable so that led me to not go anymore. This this visit work came up and the doc was surprisingly 100% on board with me. He suggested getting thru the molar extraction with factor and amicar and to look into altuviiio as it would basically bring me up to a normal person. It sounds great in theory but thought I would ask others their opinions. I’ve done very well for years so why change. I l also look at it as yes I’m older stuff is gonna happen so establishing care is a good idea and having factor on hand is good. My question is what are thoughts on altuviiio and a prophylaxis. That was never an option before. I went thru the trials of stimate and was kinda hoping something similar was available but he said this would be the best option. Anyone have advice if it’s worth it for a mild hemophiliac to start it?

My son was born last year with severe type A hemophilia. I have no family history. The HTC told me it was super unlikely that it was a spontaneous mutation, and that I was likely to be a carrier. I got my results back, and I’m not a carrier- my son has a de novo mutation.

I am, of course, relieved, as I do want another child. However, over the last few months, assuming I was a carrier, I was able to talk myself into some of the good things about having two siblings with hemophilia. Now I find myself worrying about the dynamics of having one child with it, and one child without. Can anyone offer some reassurance here ? I’m an only child, so even at the best of times I have a pretty poor understanding of sibling dynamics.