Hemophilia

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Von willie brands disease and pregnancy

Von willie brands disease and pregnancy

Have any women on here gotten pregnant with vonwillie brands disease... I'm not pregnant that I know of and have a few questions

A MyHemophiliaTeam Member said:

Well, I've had a LOT of pregnancies...and kids...I did have one pregnancy where I continued to have periods and did not test +, even though I was… read more

posted over 1 year ago

Physical Therapy

Physical Therapy

I do pilates 2-3 days a week. I also walk 3 days a week. I find this has helped keep the pain in my joints, and all around well-being more positive. My question is: Is this too much?

A MyHemophiliaTeam Member said:

If you enjoy it, you are not in pain and your levels are good I don't see why it would be too much. I think the stretching walking and strength training… read more

posted almost 2 years ago

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

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

A MyHemophiliaTeam Member said:

Interesting since I had a total hysterectomy to resolve nonstop menstrual bleeding and now my last factor level was like 120....... I think that is why… read more

posted over 1 year ago

Insomnia

Insomnia

Does anyone else have issue with Insomnia with there disorder and if so how do you deal with it?

A MyHemophiliaTeam Member said:

My daughter had a severe sleep disorder that was linked to VWD because of low ferritin. Has your ferritin level been checked? My daughter takes Requip… read more

posted 10 months ago

Are there any severe hemophilia A women out there?

Are there any severe hemophilia A women out there?

My six-year-old daughter has severe hemophilia A, which we all know is extremely rare. So I’m looking to connect with women who are in the same position. As my daughter gets older, she’s starting to ask more questions about her condition and I would love to be a bit more prepared to answer her questions, and share experience from those with first hand experience managing hemophilia as a woman.

A MyHemophiliaTeam Member said:

I have a niece who has mild hemophilia factor 8 she's in her late twenties and has 3 children, with one son who also has factor 8 deficiency.

posted about 1 year ago

Do any of you with VWD experience petechiae and fatigue?

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?

A MyHemophiliaTeam Member said:

I also have VWD and get the same spots on my chest , face and even fingers .

posted 4 months ago

Elbow pain - older Haemophiliacs

Elbow pain - older Haemophiliacs

Are there any older guys with haemophilia that are experiencing chronic pain in both elbows. Right hand small finger has pins and needles feeling?

A MyHemophiliaTeam Member said:

Yes. I am 62 with severe Hemophilia A and am currently experiencing chronic pain in both elbows, both ankles and both knees. Had total joint replacement… read more

posted about 1 year ago
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