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Hemophilia

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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 10 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 about 1 year 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 about 1 year 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 5 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 8 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 almost 2 years ago

Does Anyone Else Have Side Effects From Amicar?

Does Anyone Else Have Side Effects From Amicar?

I have been on Amicar most of my life and dealt with the side effects, but they seem to be affecting me more lately. I've had nausea and vomiting, and i get really dizzy and ligt headed to the point of fainting. The worst though is along with that, I get super overheated. Does anyone else have these side effects? It's gotten so bad I have even considered trying to switch to Lysteda in hopes it won't have the same effects. Anyone have experiences with switching?

A MyHemophiliaTeam Member said:

I've had similar side effects (nausea, dizziness) with Amicar, which I've used after invasive dental procedures (extractions, other oral surgery). It… read more

posted almost 2 years ago

Does VwD And Anemia Go Hand In Hand?

Does VwD And Anemia Go Hand In Hand?

A MyHemophiliaTeam Member said:

I have a mild case and I am not anemic. But if you have been taking Vicodin or other opiates check your testosterone. Prolonged use of pain pills can… read more

posted almost 2 years ago

Has Anyone Have Prolonged Menstrual Cycles Associated With Excessive Bleeding

Has Anyone Have Prolonged Menstrual Cycles Associated With Excessive Bleeding

Has anyone have prolonged menstrual cycles associated with excessive bleeding and been diagnosed with von willebrand disease

A MyHemophiliaTeam Member said:

I have von williebrands and ITP---(thrombocytopenia) had to have an operation called ablation. Blood. N platelett. Transfusions werent helping me. Had… read more

posted 6 months ago
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