r/Hemophilia

Hi everyone,

​I'm a father to a boy who was diagnosed with severe Hemophilia A when he was 6 months old. We went to the doctor after noticing very small bruises on his elbows, and following the blood tests, he received his diagnosis. We started him on Hemlibra every 2 weeks. Since starting Hemlibra, he hasn't had any complications.

​Up until now, (15 months) managing the condition was relatively straightforward, but he is now at the stage where he's learning to walk—and walking like a little drunk person! :)

​My wife developed severe anxiety after giving birth, and this diagnosis pushed it to a whole new level. Because she is terrified of target joints, we never let go of his hand when he walks, and we don't allow him to fall at all. This isn't even open for discussion—whenever I try to bring it up, we get into very intense arguments. I'm exhausted from fighting, but I'm deeply worried about my son's physical development.

​I regularly attend hemophilia association meetings, and doctors keep emphasizing that on Hemlibra, it takes a very severe injury to cause serious complications. Yet, we don't even let him fall onto soft play mats. In fact, almost our entire house is covered in soft padded mats.

​I don't know what kind of long-term effect this overprotection will have on my son. I feel like not learning how to fall (and how to catch himself) might end up hurting his movement and motor skills even more. Whenever I suggest to my wife that she might benefit from psychological support, it leads to huge fights. I truly believe this dynamic might end up harming my son more than the condition itself.

​I know that building good muscle mass is crucial to protecting joints and avoiding target joints, so he will definitely need to get into sports as he grows up. I really hope he ends up loving swimming—otherwise, things will be very tough for us.

Of course, I worry about my son immensely as well, protecting him and really focused the environment to prevent any harmful material when we playing or doing any other activities but I'm trying to accept this condition and treat it as just a small part of his life—especially seeing all the progress being made in gene therapy.

​Preventing every single fall is impossible. Occasionally he slips away from us and falls, and seeing that nothing bad happens reassures my wife a bit. That’s a positive sign, but I fear that if a minor incident ever occurs, we'll end up right back at square one.

​Are there any parents here who have gone through a similar process? How did you handle this anxiety and balance keeping your child safe without stifling their development?

Hello! I (25F) have a severe factor VII deficiency. Recently my bleeding has gotten wayyy worse and I’ve had to up my doses of cyklokapron significantly. Even with the meds, I’m having multiple bleeds a day lasting over 40 minutes and an increase in bruising. I haven’t changed my diet or lifestyle at all but we are going through a heatwave here so I’m wondering if that could be the culprit? Has anyone else noticed an increase in bleeding when it’s very hot? Not sure if it’s worth going to the haematologist for or not as I had my yearly check up about 4 months ago. Thanks!

Hi all,

As parents with babies who have hemophilia how do you deal with head trauma, head bumps, falls, etc. my baby just turned 6 months, waiting for his appointment to get him to a doctor but in the meantime how do you deal with these instances? I feel like every time his head slightly touches anything I go into panic mode thinking he might get an internal bleed I don’t know about. Please share!

Looking to hear what others who are heterozygous for Factor V Leiden did with successful pregnancies.

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Last Wednesday I stubbed my big toe very very hard. My MTP joint (where big toe connects to foot) was not in pain but I couldn’t flex upward and my joint closer to the nail was a little swollen and bruised. It got worse the second day and then got progressively better.

I was feeling much better yesterday (could walk fairly normally) until later it got progressively worse. The part of your MTP joint where you would point to a bunion is where it’s very very sharp pain. Little red spot too and now I cannot walk on the foot. Anyone experience anything like this before?

Hi! I have VWD type 1. I am not anemic, but I am iron deficient, and it becomes very apparent during my menstrual cycle with symptoms like brain fog, fatigue, etc. But I know that a lot of iron supplements are pretty harsh on the stomach, which I already have some issues with. I actually bought some not long ago, and unfortunately, my stomach reacted quite badly.

I know everyone's bodies are different, but I'm interested in gathering some info on what iron supplements may have worked for the folks here. My PCP is currently out, but a PA suggested Vitron-C. I'm a little hesitant to spend money on more supplements with the thought I may not be able to sustainably take them.

Hi! I am here to share our story and to find some experiences of others living with VWD type 1.

Due to a chromosomal defect, our little boy (13 months) has only one copy of the VWF gene. He was just recently diagnosed with VWD type 1 (vWF activity around 30 %). We are still a little unsure what this means for his future life. He was born with a cleft palate and he already had his palatoplastic a few months ago. At the time of surgery, we neither had his genetic nor coagulation results yet, but they surgeons did not see any excessive bleeding after surgery.

He will be starting at daycare soon and a part of me is a little worried that they will not be able to take care of him appropriately. He is delayed in motor skills and he hurts himself quite easily, eg. falls on his face an bleeds from his lips or tongue. We still don’t know if we need an emergency kit for him and if daycare will be able to handle it.

From the people with VWD type 1 in this community, or parents of children with VWD type 1, could you share any experiences from your childhood that will give me some peace of mind? Did you need an emergency kit? When were you diagnosed with VWD?

Hi, not sure if this is the right sub but I had a question. How does alcohol consumption affect someone with Wiskott Aldrich syndrome? I've heard of it affecting their platelet count but even then, I'm not sure If that's correct. Thank you

So My blood type is O- while my husbands Blood type is A- but our baby is (+) so how does this happen, and how likely
Is it to be able to have another baby in the future, I’m curious to see if anyone else has had this in there pregnancy or know someone that has

For USA patients . Greetings - Perfect Focus Research (www.perfectfocusresearch.com) is conducting a market research 30 minute Survey with Hemophilia B patients (moderate - severe) who currently ONLY use on demand therapies for a market research study. OK if you used prophylactic in the past. This is a 30 minute Online Survey. Each participant receives $100.00 Honorarium. This is pure market research. And nothing proprietary is asked. We offer an incentive for your feedback and input to what is presented. If interested please let me know HERE and I'll respond with more info. Thanks! PFR Research

I really want a side labret, recently I got my ear pierced and it was all okay, just healing took longer but no bleeding etc, will it be okay with a mouth piercing too?

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==

For USA patients . Greetings. Perfect Focus Research (www.perfectfocusresearch.com) is conducting a market research 30 minute Survey with Hemophilia B patients who ONLY use on demand therapies for a market research study. This is a 30 minute Online Survey. Each participant receives $100.00 Honorarium. This is pure market research. And nothing proprietary is asked. We offer an incentive for your feedback and input to what is presented. If you're interested please let me know HERE and I'll respond with more info. Thanks! PFR Research.

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?

Hello all, to start with, we just had our youngest born in January, and he was diagnosed with a prothrombin aka factor 2 deficiency. It is congenital and it is heterozygous compound, which I think is the technical terminology.

With that said, he spent the first week of life in the nicu and then he had a random brain bleed caused by his disorder the night of Easter. I rushed him up to the hospital because he was vomiting and having seizures. Due to that, he's had some brain damage in the white matter of his brain, the right side had a midline shift due to blood buildup, and is functionally the same as a newborn. At 6mo he cant even hold his head up and gets therapy 4 times a week and Profilnine infusions once a week. Ik thats a factor 9 infusion, but its got factor 2 in it, and it is much more readily available than factor 2 specific drugs due to the rarity of the condition.

All this long winded explanation to say, my wife is a sahm and has had a really tough time with this. Her family was very helpful in the beginning when it was uncertain if our son would survive in the PICU, but since we've been home, the support has practically dried up. She tries to talk to them and they kinda brush her off or give her 1 sentence empty platitudes and then change the subject.

She's been having breakdowns on and off since we've been home, and she's just been very unhappy. Tonight she had the biggest breakdown I've seen yet, and I finally got her to open up more about how she's feeling. Basically she just wants more people to talk to other than me about everything and she's upset that no one really understands.

So I figured I would come here to reach out. I know this is for hemophilia which is technically different conditions than our son has, but I think having her talk to other moms of kids with bleeding disorders would help her a lot.

If any moms out there would be willing to contact us, I would be grateful to get her in touch with them. We are in the Southern U.S. in the central time zone for reference.

Also I would be happy to answer any questions anyone might have about our son's condition since it is a super rare diagnosis from what I have seen.

TLDR:

Son was born with a factor 2 deficiency, had a brain bleed leaving him very behind in development, and my wife is having a hard time with it. Asking for mom's of kids with bleeding disorders if they would be willing to talk with her.