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:

Sorry Be Well @!!

posted 17 days 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'm glad you did okay. I have not had problems with bruising and mammograms... the newer machines seem a little more gentle....

posted 2 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:

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 about 2 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 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… read more

A MyHemophiliaTeam Member said:

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

posted 7 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:

My oldest daughter is A-, and my youngest is O+. They both have Delta Granule Storage Pool Disorder. We haven't done any genetics testing yet, but we… read more

posted 9 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:

Yes terrible for many years. I'm sorry you are hurting.

posted 10 months 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 about 1 year ago
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