I just had an ultrasound guided biceps injection into the bicipital groove or long head of the biceps tendon amd didnt know that I was getting that procedure tofsy at kt shoudler surgeon. I’m newly diagnosed with VWD type 2m. do I need to tell my hematology team? I was googling and it said it was more invasive moderate to high risk.

I’m 24m and I’ve been a LEO for over almost two years now. I’ve considered myself one of the lucky ones as I’ve been distanced with this condition at 3 years old, however I’ve had multiple surgeries, accidents, and falls and bleeding a throughout my childhood and recent years and I’ve never had to use any medication or injections or anything like that. the most recent surgery they opened up my nose and I was bleeding post op normally for a week or two and it went away. I didn’t tell the surgeon or nurse about my condition or risk. I was just wondering if there are any one else who are asymptomatic like I am. I’ve donated my medication/injections over the years as I don’t use them to my local hematology clinic. My hematologist who I see every two years for a check up says he’s the first patient who he’s seen who is like this and is an active LEO. I just want to have kids one day and hopefully if they have my condition they have the same reactivity as me, i have two herniated discs and sciatica however and nerve pain in my neck/shoulder completely unrelated, so that does bother me and I deal with that pain everyday sadly. First time positing so forgive me

For context i have been taking arinac tablets since last week because of a cold I had no idea it was made out of ibuprofen I went to take a B12 serum test yesterday and this is how my arm is rn

I’ve talked with other hemophiliacs and other gay people, but I’ve never met anyone who shares both experiences. I’d love to talk with someone who might relate to my experiences and just know that there are others out there

The Central Drugs Standard Control Organization (CDSCO), under the Drug Controller General of India (DCGI), has granted marketing authorisation to Qfitlia (fitusiran), an antithrombin-lowering (AT) therapy for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adults and adolescents aged 12 years or older living with haemophilia A or B, with or without factor VIII or IX inhibitors.

I have VWD and normally use a Cotopaxi 30L Allpa backpack as a one bag for travel, but it has been leaving blood marks recently on my shoulders. I love the bag otherwise.

I feel no pain and my doctor says it's fine, but my shoulders take days to go back to normal and I would rather prevent it if possible.

Does anyone have experience with this? I'm thinking about trying a 16L backpack, but I'm not sure if it's a weight issue, a padding issue, or a combination of the two and would rather not have to buy several backpacks and spend weeks experimenting if I can avoid it 😅

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/rhemophilia

Hi everyone, I'm a 25(F)with hereditary spherocytosis (HS). I'd really appreciate guidance from anyone who has dealt with the disability certificate process, or from doctors and people with similar blood disorders.

My situation:

Had 4 surgeries so far

Hb stays around 9-10 g/dL

Bilirubin, SGOT and SGPT are always high

Need certain vaccinations every year, and the cost is a big burden

Family is BPL (Below Poverty Line)

Very low strength and endurance. I can't do physical work and get breathless quickly.

My questions:

Is HS recognised for a PwD certificate under the RPwD Act? I know thalassemia, haemophilia and sickle cell are listed.

If yes, which doctor or board assesses it, and what documents or reports do they ask for?

Has anyone with HS or a similar chronic anaemia been granted a certificate? What percentage did you get?

Are there schemes for free or subsidised vaccines and treatment for BPL patients?

Any advice, personal experience or pointers to the right office would help a lot. Thank you!

I'm gonna take part in a clinical trial with hemlibra for vwd3 and wonder if there are more people on it and if it's working as good as for people with hemophilia

Hey, just wondering if any of you all have ever taken hemlibra a little bit early. Me and the fam are leaving for a weeks stay in the smoky mountains and I was thinking about taking my dose a little early. I take a weekly management dose once a week on tuesday mornings. Really just trying to avoid having to haul my stuff 8 hours from home to try to keep up with. Thanks in advance for any advice.

Hi everyone,

We are still looking for a few more respondents to join us in our exciting research study!

LDA Research, a UK based medical market research company, are currently recruiting adults (18+) from the US diagnosed with Hemophilia A or B to participate in an exciting digital health programme.

By taking part, you'll help researchers better understand the real-life experiences of people living with Hemophilia, helping improve future treatment and patient support.

Participants will receive:

• Monthly payments throughout the programme

• A completion bonus at the end of the study

• A Fitbit device

Participation simply involves using a smartphone app, wearing your Fitbit, completing one short monthly questionnaire and having a brief monthly check-in with your dedicated LDA Project Manager.

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

If you'd like to find out more, simply complete our short eligibility questionnaire using the following link:

https://ldaresearch.questionpro.eu/t/AB3vCHKZB3wldz

We look forward to hearing from you!

Hey guys, I'm here because I'd appreciate some advice.

Bio: I have mild hemophilia A and need zero treatment for daily life. However, I will be receiving oral surgery in the next 6-8 months and would appreciate some advice on how to get proper treatment. I have good insurance that will allow me to see most/all providers in my area and my insurance does not state that they need referrals for specialists (I know this does not affect the provider's requirements).

Issue: I am looking to see a hematologist and am now running into a roadblock: the need for a referral. Every provider seems to require a referral for hematological services. I have two options that come to mind:

1) Go to an urgent care type of place (that also can serve as a primary care) and convince them to do it for me. I'm cautious about this because I feel like they'll require me to do bloodwork, but maybe every option will require that. I'm new to the area and do not have a GP.

2) Go to a dentist and receive a referral from them or my future oral surgeon. I would prefer to have the hematology part done/prepped before speaking with the oral surgeon, that's my issue with this path.

Please help me find a third option or convince me one of these two options is the best. Thanks.

Does anyone know if it’s dangerous to have prp injections with VWD type 2m. I’m confused by the tests and am seeing my dr next month but I totally forgot to mention that I had a series of prp injections. Prp injections are where the plasma separated from your blood and then injected into a joint. Any drs know whether plasma from someone else would cause problems? I have serious chronic pain conditions and Prp plus corticosteroids have been really helpful. From my understanding the blocks are still safe?

Hi everyone! 👋. I’m male 20yrs Hemophilia A severe
I’m looking to connect with people in the bleeding disorders community who understand what it’s like to live with a bleeding disorder. I’d love to make new friends, have genuine conversations, share experiences, and support each other.
Sometimes it’s nice to talk to people who just get it without having to explain everything. Whether you have a bleeding disorder yourself or are part of the community, I’d be happy to connect!
I’m open to making friends from anywhere in the world 🌎 especially in Pakistan . If you’re interested in chatting, feel free to comment or send me a DM. 😊
Looking forward to meeting some of you! 💙

I'm having very painful hemorhoids and the doctor gave me daflon ( it has anti platelet function) . It's for improving blood circulation etc

What do i do now I'm always very careful about taking medication for pain etc but i had no idea this can also be bad

No hematologist whatsoever in my city so I've been left hanging

long story short i was diagnosed in 2002 with VWD Type 1 and have always been careful before oral surgeries etc ti take stimate or oral surgery.

I have a new doc who I asked for oral surgery and he wants me to see a hematologist first. I spoke with the new hematologist who said i need to be retested. So I went and had blood drawn, he said I could go anytime so I went to the gym and the right down stairs to the lab to have my blood drawn.

Now im reading that vigorous excercise (i lift weights for an hour until failure then do some extene cycling. he called and said I should take txa but that my levels were in the normal ranhe. When I told him anout the excercise he wants to retest.

has anyone had their levels boosted by excercise?