Hemophilia

Questions + Answers

Don't see your question? ask question
All Questions Most Answered Most Useful Needs Answers Resources:
View:

Have you experienced social stigma because of your hemophilia? Any advice you would share?

tags: social stigma

posted 8 days ago by A MyHemophiliaTeam User
view all answers (5)

It's interesting because I was just engaged in a facebook group discussion that made me realize there are many people who still have false beliefs about… read more

posted 7 days ago

How does your family deal with schedule changes during the holidays? Is it more difficult to infuse?

posted about 1 month ago by A MyHemophiliaTeam User
view all answers (3)

For us, when we spend holidays away from home, because our Son infuses every other day it is really helpful for us to have a factor case/bag with all… read more

posted about 1 month ago

What’s the best analogy you used for a family member to understand hemophilia?

posted about 2 months ago by A MyHemophiliaTeam User
view all answers (7)

How I really educated myself and my daughter was we signed up with our local chapter I live in Florida so mine is Florida Hemophilia Association just… read more

posted about 2 months ago

pregnancy, labor and delivery with von willebrands

HI I am a 31 year old female with Von Willebrands. I was told I would die during labor and delievery, but notice you have 2 children. Did you have any complications during pregnqacy and childbirth?

posted about 2 months ago by A MyHemophiliaTeam User

I had three perfect pregnancies and births and didn't find out I had VWD until I was 34 and I was done having kids. However, I have been on a 6 year… read more

posted about 1 month ago

Do you or your family miss out on holiday events because of a bleeding disorder?

posted about 2 months ago by A MyHemophiliaTeam User
view all answers (10)

Not me, but years ago my sister ended up in the ER on Christmas Day & she missed my first wedding because she was in the hospital also due to… read more

posted about 2 months ago

When surgery is needed , how do you get oncologists/hematologists to work with surgeons to arrange surgery, infusions, and observation?

I posted an in detail story about what’s happening, but in short. I need multiple surgeries and I am constantly being canceled by the oncologist for numerous reasons (not financial) for some ridiculous reasons such as dates, locations, etc. no referrals or rescheduling, no nothing, just cancels the surgery and surgeons eventually get annoyed and back out leaving me scavenging… read more

tags: Surgery difficulty Oncologist issues hemotologist issues

posted 2 months ago by A MyHemophiliaTeam User
view all answers (4)

I’ve never heard that or of those?! But I just googled it and found one not close but around 40 miles. Moving forward I’ll definitely look into that!… read more

posted about 1 month ago

How do you manage fatigue associated with your bleeding disorder?

posted 2 months ago by A MyHemophiliaTeam User
view all answers (6)

I try to save my days off work for when I am total exhausted and need to rest

posted 2 months ago

For Mild Hemophilia- females- How do you know when to treat, what symptoms do you experience that you relate to a bleed?

As a newly diagnosed female (former symptomatic carrier without treatment) I am trying to understand what others are experiencing and what advice they are getting. I want to have some background info to bring to my local hematologist and my HTC. Since my diagnosis I have heard some people say treat for pain even without swelling or heat, others say that there has to be visible signs of a… read more

posted 2 months ago by A MyHemophiliaTeam User
view all answers (3)

What are your levels? They do not always mean anything, but they can help a bit. My level is @ 20% - but they do change depending on the time of the… read more

posted 2 months ago

Do any of you with VWD experience petechiae and fatigue?

For the last couple of months, I've experienced periodic extreme fatigue and I get petechiae (small red dotted rash) on my legs and chest. Are these typical symptoms any of you have experienced with your Von Willebrand Disease? What do you do about it?

tags: Von Willebrand Type 1 Chronic fatigue petechiae

posted 3 months ago by A MyHemophiliaTeam User
view all answers (3)

You may want to ask the Dr to check your platelet count

posted 2 months ago

How do you help decrease your anxiety? Any tips you would share?

tags: decrease anxiety

posted 3 months ago by A MyHemophiliaTeam User
view all answers (7)

For us, knowledge is power. Connecting with other chronic illness warriors and getting creative about the best ways to deal with things helps... and we… read more

posted 2 months ago
MyHemophiliaTeam is a free social network that makes it easy to find others like you and gain insights from others living with hemophilia.
Sign up Log in