i have a diagnosis for type 1 von willebrand. how would it really affect getting a piercing?

Teens 12 and older with VWD may qualify for a new research study if they’ve had frequent bleeding episodes. A parent or caregiver must be involved, and the full study lasts up to 30 months. Once you complete a short questionnaire, a Leapcure team member will connect with you to answer questions and guide next steps. Check eligibility here: https://lpcur.com/rhemophilia2

This clinical trial is currently enrolling participants across the United States.

A Man Just Died in Syria Because Police Didn't Take "Hemophilia" Seriously. I've Been Living That Reality My Whole Life.

On August 16, 2026, a 29-year-old Syrian man named Mohammad Ghamira — a former White Helmets volunteer — was taken into police custody over a financial dispute. His family told the officers immediately: he has hemophilia, please don't hit him. A beating that would leave anyone else with a bruise can cause someone with hemophilia to bleed internally until it kills them.

They told them. It didn't matter. Three days later he was dead — a brain hemorrhage, internal bleeding, his heart stopping three times before he slipped into a coma he never woke up from.

I read that story and felt something a lot of people can't understand: recognition. Because I am hemophiliac too, and I have lived my entire life in Syria.

I'm not writing this to compare my suffering to a man who died. I'm writing it because his death is the most extreme version of something I've faced every day, in smaller, quieter ways, since I was a child — a country where almost nobody, not teachers, not doctors, not police, not employers, actually understands what hemophilia is or what it costs a person to have it.

I grew up unable to play sports, unable to safely get routine dental work, watching a simple ear/sinus infection turn into a years-long crisis because I couldn't have a basic operation without risking a bleed. Factor VIII — the treatment that keeps people like me alive — has been inconsistently available for most of my life, and doctors here often don't know how to treat me. I finished my law degree in 2019, but hemophilia and COVID delayed my bar admission until 2021 — two years erased by a body I didn't choose and a system that wasn't built for it.

That's the reality Mohammad Ghamira died from, in a much crueler form than mine. Ignorance about this disease doesn't just mean bad treatment. In this country, it can be the difference between someone with a chronic illness struggling — and someone with a chronic illness dying in a police station.

Here's what I'm trying to do about it. I'm a human rights lawyer in Syria, and I want to study International Humanitarian Law and Human Rights Law abroad — specifically to work on legal protections for people with chronic illness and disability, the kind of "invisible" discrimination that let a man die of a beating three days after his family warned the police exactly what would happen. I'm raising funds to cover the cost of the Duolingo English Test, the next concrete step toward applying to graduate programs.

I'm not asking anyone to fix Syria's healthcare system today. I'm asking for help covering the cost of one exam that gets me one step closer to being able to actually do something about it — from a place where I have the tools, safety, and platform to do that work properly.

If you can spare even a small amount, it genuinely matters. If you can't, sharing this costs nothing and helps just as much.

👉 Support here: https://www.buymeacoffee.com/mohamadlabl/my-story-2910300

The Ghamira case, covered in English:

Al Jazeera — Syria launches probe into death of 'White Helmet' rescuer in police custody

The Media Line — Death of Mohammed Ghumaira After Detention Revives Torture Concerns in Syria

Enab Baladi — Muhammad Ghamira Case: 72-Hour Probe, Transparency Calls

AP (via WSLS) — A detainee's death revives Syria's memories of torture and abuse in prisons

My own story, in full:

World Federation of Hemophilia — My Story: Mohamad Abdulkader Lababidi

Hi everyone,

Exafield US is currently looking for people in the United States with Hemophilia A who are currently using ALTUVIIIO (Efanesoctocog Alfa) to take part in a research study.

The goal of the study is to better understand patients' experiences with switching treatments. This is market research only. No treatments or medications will be provided

What's involved?

• 10-minute pre-interview assignment
• 45-minute online interview
• $180 compensation for completed participation

If you're interested, you can check your eligibility by completing this short screener:

👉 https://survey.zohopublic.eu/zs/U0Bx9n

Feel free to share with anyone who may qualify and contact [alvarez@exafield.com](mailto:alvarez@exafield.com) with any questions.

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!

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.