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Real members of MyHemophiliaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
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Has Anyone Heard Or Been Told That You Cannot Take Any Omega Oil Supplements If A Vonwillebrands Patient ?

Has Anyone Heard Or Been Told That You Cannot Take Any Omega Oil Supplements If A Vonwillebrands Patient ?

I have been told that taking omega oil supplements could be very dangerous as I have Vonwillebrands. Has anyone else heard or been told this?

posted June 8, 2020
A MyHemophiliaTeam Member

I was told by my daughters’ Hematologist that they couldn’t have anything with fish oil because it could thin their blood. Their bleeding disorder isn’t Vonwillebrands, but I would assume this would… read more

posted November 16, 2021

How Do You Deal With People Overreacting To Bruises?

How Do You Deal With People Overreacting To Bruises?

I bruise extremely easy with my May-Hegglin. Many times I have no clue what even caused the bruise. I like to wear skirts, dresses and shorts, but lately I dread wearing them because of my bruises and the reaction I get from others. I know I shouldn't care, but I don't want people to think I am abused either.

posted March 4, 2020
A MyHemophiliaTeam Member

I don't take any meds for my condition.

posted November 8

Do Any Of You With Vwd Have Extreme Fatigue,joint Pain And Burning?

Do Any Of You With Vwd Have Extreme Fatigue,joint Pain And Burning?

I can't seem to get enough sleep anymore. Somedays my joints hurt so bad I can hardly move and I am experiencing a terrible burning sensation around different joints when I move them. The most recent one is next to certain areas along my spine. My VWD is mild but this all worries me since it is happening more frequently.

posted February 11, 2020
A MyHemophiliaTeam Member

If it’s neuropathy try lotion and myrrh

posted October 5

Have Any Women With Mild Hemophilia A (or "symptomatic Carrier") Had Issues With Bruising With Mammogram?

Have Any Women With Mild Hemophilia A (or "symptomatic Carrier") Had Issues With Bruising With Mammogram?

I am scheduled for diagnostic mammogram. I have factor VIII levels in the low 40% and tend to bruise easily. Worried about the mammogram causing significant bruising so am wondering about the experiences of others.

posted December 16, 2019
A MyHemophiliaTeam Member

I’ve had a few and never had a problem

posted April 2

Can Anyone Tell Me About The Drug Wilate Used To Treat VWD

Can Anyone Tell Me About The Drug Wilate Used To Treat VWD

posted November 5, 2019
A MyHemophiliaTeam Member

I take It. It’s factor 8 and has less things in it to react to is what I was told. I don’t feel as sick after taking it. Not sure what else you wanna know about it.

posted October 5

Surgery For Hemophilia Carriers

Surgery For Hemophilia Carriers

Has anyone who is a known hemophilia carrier with 50% factor levels had surgery.
My sister is due to have a knee replacement. What was your experience and what did you have to do pre surgery and post op?
Please share your experiences. Thanks

posted October 17, 2019
A MyHemophiliaTeam Member

I only had a minor knee surgery but the results were not good. At the time they didn’t acknowledge I was a systematic carrier and the results are a permanent super sized right knee. Surgery was eight… read more

posted January 8

Big Bruise To Forehead

Big Bruise To Forehead

Hi, my 3 year old son has moderate hemophilia, level 3.

He had a nasty bruise on his forehead that has swelled up to a golf ball size, and has rebled a little.

Apart from trans acid, is there anything any of you guys have used to stop the bleeding and support recovery?

We are very worried

Thanks so much

David

posted August 21, 2019
A MyHemophiliaTeam Member

When my son was small he seemed to get those at least twice monthly. I discovered an ace bandage around his head with a small soft ice pack tucked inside helped get rid of them or keep them from… read more

posted January 8

What Could Be Wrong With Me?

What Could Be Wrong With Me?

I noticed some petechiae spots on my abdomen and legs in May. The ones on my abdomen started to spread and get lighter in color in the center. One doctor said that I had ringworm. I started using Lotramin. The spots continued to spread. I went to see a different doctor. He thought that it might be Lupus, but my ANA was negative. My aPTT was 34, which was said to be high. My Factor VIII Activity was 37%. My von Willebrand Factor (vWF) Ag was 81%, and my vWF Activity was 63%. The doctor ordered… read more

posted June 30, 2019
A MyHemophiliaTeam Member

Still no answers. The hematologist is sending me to a rheumatologist now.

posted August 8, 2019

Blood Types?

Blood Types?

I am curious, my husband has O negative blood and his friend also has negative blood. These are the only 2 hemophiliacs I know. I was wondering if there is a correlation with negative blood and hemophilia? Also, my husband has a MTHFR mutation, which makes his body less able to detox, among other things. I do not know about his friend’s status on this, but we found out through 23&me and genetic genie. Does anyone else know their status as far as blood type and/or MTHFR mutation, specifically 677… read more

posted May 14, 2019
A MyHemophiliaTeam Member

My oldest son was A positive blood type; second son was 0 positive blood type, both had hemophilia VIII-severe

posted January 8

Trying To Find The Answer

Trying To Find The Answer

I am protein s deficiency and my levels are almost non existent
I am also protein c deficienc and it is almost unable to be detected.
I have been on blood thinners since September of 2011 I have had a p.e. and 2 small anyruisum. I have been trying to find out what this diagnosis means . I will take blood thinners for the rest of my life. I just can't get anyone to fully explain it to me

posted February 26, 2019
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