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Hemophilia

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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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Whats The Best Healthcare Coverage Plan For Hemophiliacs If You Are Not Employed?

Whats The Best Healthcare Coverage Plan For Hemophiliacs If You Are Not Employed?

My current situation is that I am 28 years old and am about to start medical school in a state outside my own (I am a Minnesota resident and will be going to Virginia for school). Since I am over 26, I can not enroll under my parents and I also will not be working and the school does not provide insurance. This leaves me with finding private healthcare coverage. Has anyone else dealt with a situation similar to this? I am afraid of… read more

A MyHemophiliaTeam Member said:

Thanks for the help!

posted 12 days ago

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?

A MyHemophiliaTeam Member said:

I had some bleeding problems after taking krill oil supplements for its Omega 3 fatty acids. Had to discontinue them, and hematologist said no more fish… read more

posted about 1 month ago

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.

A MyHemophiliaTeam Member said:

My youngest daughter has problems with bruising due to her Delta Granule SPD. For years I was accused of abusing her because of the bruising.… read more

posted 4 months ago

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.

A MyHemophiliaTeam Member said:

Yes
I do. I also have vonwillebrands that is not too bad.

posted about 1 month ago

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.

A MyHemophiliaTeam Member said:

Yes everytime!

posted about 1 month ago

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

A MyHemophiliaTeam Member said:

Surgery went well. Assay done pre-op had factor levels at 69%. Surgery was carried out without any additional factor. We had on stand-by just in case!
read more

posted 6 months ago

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

A MyHemophiliaTeam Member said:

Use icepacks and pain relivers.

posted 11 months ago

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… read more

A MyHemophiliaTeam Member said:

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

posted 11 months ago

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

A MyHemophiliaTeam Member said:

I AM Rh Neg ( O neg)
My first born was O positive.
I am not certain of my youngest blood type . We do not have hemophilia but we all have Vonwillebrands… read more

posted about 1 month ago
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