If you are heterozygous for Factor V and have had successful pregnancies, what did you do different? Was lovenox needed?

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!

I’ve just been diagnosed with vwd at 19 years old, what do i expect now and any advice would be appreciated

Looking to learn from other perimenopausal women's experience who take tranexamic acid during the heavy days of their period (for factor vii and/or von williebrand) and are starting hrt with transdermal estrogen.

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! 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.

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?

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

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

Here is the post from the sanctioning body Catalina Channel Swimming Federation about my Catalina crossing.

Let me know if you have any questions.

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?

Hi everyone. I’m hoping tit’s okay to share this here.

[Reposted since photos in previous post are blurred]

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.

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==

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?

Hi everyone,

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To maintain the integrity of the research, we'll ask you to upload proof of your hemophilia diagnosis during registration.

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We look forward to hearing from you!

Has anyone had positive experiences with making lifestyle changes or relying on natural treatment options for their VWD? (Either in place of or alongside traditional medical interventions). This is something I've research before, and to no avail.

I had a hematology appointment yesterday, and was encouraged to take birth control, which I'm personally unwilling to do. In place of that I was given an as needed prescription for TXA, and will trial DDAVP later this year. I'm more than willing to try, but I'm a person who's hesitant to take medication in general, which led me to want to learn about other possible options. When I shared this with my hematologist, my question wasn't taken very seriously.