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How do I add someone how has Hemophilia.

A friend, he's on facebook I would like to mention to him about this site. I don't think he knows about it and I would like to send him a link or a request some how, help please! HELP ME! PLEASE! lol

posted 5 days ago by A MyHemophiliaTeam User

Any women with a bleeding disorder have a hysterectomy?

If so, would love to hear your story and your healing time.

posted 15 days ago by A MyHemophiliaTeam User

I did, because of non-stop bleeding for over 6 months.....the surgery went fine no complications, but it was very painful recovery. Three months before… read more

posted 12 days ago

Has anyone with Von Willebrands been on a medication that lowers platelet count?

I am looking at starting a Rx called Nuedexta. It's the one and only med approved for the condition I'd be treating, but it can lower platelet count. My VW's is mild... this condition I'm looking to treat is not... how do I go about knowing if it is safe for me? I've had some incompetent Drs in the past and will not trust any Dr blindly if I can research too.

tags: Von Willebrand Type 1 Low platelets RX Nuedexta Pseudobulbar Affect von Willebrands

posted about 2 months ago by A MyHemophiliaTeam User

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

Also as long as you know that you have Von Willebrands and are able to get proper treatment before and after delivery there is no reason why you… read more

posted 3 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 4 months ago by A MyHemophiliaTeam User
view all answers (6)

Thanks, once again I wasn’t able to use one for this surgery but I have another coming maybe two more so it’s my priority to get to one of those… read more

posted 15 days 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 4 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 4 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 5 months ago by A MyHemophiliaTeam User
view all answers (9)

I get strange red dots on my legs from time to time and I am always tired. I also have trouble sleeping. Most people don't understand vwd so I just tell… read more

posted 28 days ago

Mussel Spasms

Last night my son got a few mussel spasms .... is this a concern? Is this a symptom of a brain bleed that might have been missed? My son is sever Hemophilia Type A

tags: spasm brain bleed Hemophilia Factor VIII

posted 6 months ago by A MyHemophiliaTeam User

Is anyone making use of affordable hand held infra red vein viewer devices to assist with seeing your viens.

I have used large costly mobile vein viewer devices in hospital.
I have found other more affordable hand held devices on the web.
Please share any experiences you may have had with your recommendations.
If possible also supply manufactures name and model number of the device.

tags: Vein viewers

posted 6 months ago by A MyHemophiliaTeam User

I would also like to know the cost and if it is worth it .... will soon need to infuse my baby at home and I think this will help allot. Where did you… read more

posted 6 months ago
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