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?

Hi everyone 👋. For background, I was diagnosed with VWD Type 1 around age 16. I’m in my early 30’s now. Growing up I had horrendous menstrual cycles that I learned were not normal. I had not had any surgeries or major bleeding events prior to the time of my diagnosis so menstrual cycle was the only obvious indicator. My OBGYN at the time referred me to a fantastic hematologist. After running panels, she diagnosed me with VWD Type 1, and I saw my hematologist yearly (she refilled my stimate nasal spray that I would use during menstrual cycles). My diagnosis remained the same. I also received DDAVP prior to wisdom tooth extraction.

Fast forward to 2018- I accepted a job out of state, got very busy, menstrual cycles improved a bit, and so I never took the time to get set up with a good hematologist. Then COVID hit- further delaying seeing a hematologist. In 2022 I found out that I needed to have a hernia repair, so I reached out to hematologist to have a my levels checked and to come up with a plan for surgery. Levels were in the low normal range so the hematologist said I didn’t need anything and cut me loose with no plan for surgery. My surgeon almost canceled my surgery over this. The anesthesiologist insisted on doing DDAVP despite the hematologists feedback and refusal to sign a clearance letter for me but wouldn’t advise on a plan. The hematologist didn’t advise coming back.

Prior to becoming pregnant in 2024 I had my levels checked again with a new hematologist. The levels were again, low normal. This hematologist told me I didn’t need to take any additional precaution during pregnancy and I could see a typical OBGYN (not high risk). I did end up getting pregnant and following the birth of my daughter I had a lot of bleeding and some of the worst menstrual cycles of my life. I called back into the hematologists office just last week trying to explain this as it’s literally debilitating at this point, and they told me my levels were normal in 2024, and they don’t need to see me, and referred me back to OBGYN and that VWD was resolved. My original hematologist told me this is a life long issue, not one that just resolves out of nowhere.

My OBGYN ran the VW panel last week and as per usual my VWF and antigen is low normal but my Factor VIII is low, outside of the normal range. Has anyone else with VWD type 1 been dropped by hematology? I don’t know if this is worth continuing to look into or if I’m really just fine now? My only concern is that my husband and I want more children and my grandmother almost died from hemorrhaging with her second child. I don’t want to be overly cautious, but I am shocked at how easily they’ve just written me off.

ETA: OBGYN did check for polyps, fibroids, and other issues that could cause abnormal bleeding but all other tests and ultrasounds came back fine.

My girlfriend has VWD but I’m not sure what type she never specified. But her period cramps are the worse and I cannot bear to see her suffer especially when I can’t really do anything to help since it is an internal pain so I am just on here just to ask for help and advice from people with similar experience what would help, what pills to take and what pills not to take, please any advice I would be grateful for.

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. See less

So i live in a very backward place and we don't have any hemophilia centre whatsoever ( can't travel to any major city because of dangerous highways)

I've been dealing with throat bleeding for 5 months now like a wake up at night randomly and have to see my pillow stained with blood or my throat hurting severely etc etc

Now what do i do my factors aren't dangerously low (30%)

I have to get both a septoplasty and tonsillectomy alongside sinus drainage but I'm confused if i can even get it where i live due to how dangerous tonsiloctomy is

What should i do who should i contact to possibly get factors delivered to me via welfare??