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Hemophilia

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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:

Me as well! I don’t know what is to expect from this VWD though. I have many other conditions like fibromyalgia and psoriatic arthritis

posted almost 2 years 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:

I’ve had a few and never had a problem

posted 3 months 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:

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 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:

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 6 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 ordered… read more

A MyHemophiliaTeam Member said:

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

posted almost 3 years 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:

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

posted 6 months ago

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

I Have Von Willebrand

I Have Von Willebrand

Does anyone have chronic pain I have it in neck back hips knees and ankles already have had 1 total knee and 1 total hip replacement

A MyHemophiliaTeam Member said:

I use a lot of pepperment oild and jajoba oild mixed for joint pain that helps

posted over 2 years ago

Is It Safe To Have A Spinal? Or Would I Be Better Off Having General Anesthesia

Is It Safe To Have A Spinal? Or Would I Be Better Off Having General Anesthesia

i need knee surgery, and maybe back surgery. I have a pace maker and can't have an MRI aslo, they want to inject dye into me back to see what is going on. I was told i could end up as a cripple if i bleed. Anyone know about this

A MyHemophiliaTeam Member said:

GENERAL anesthesia because with a spinal you'll wake up with a headache and pain you don't want that

posted over 3 years ago
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