Hemophilia

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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

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A MyHemophiliaTeam Member said:

I had a biopsy done last week. They said it was just my capillaries bursting under my skin. I was advised to start taking Vitamin C (which I already… read more

posted 14 days ago
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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

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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 2 months ago
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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

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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

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A MyHemophiliaTeam Member said:

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

posted 3 months ago
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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

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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 6 months ago
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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?

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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 7 months ago
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Does VwD and Anemia go hand in hand?

Does VwD and Anemia go hand in hand?

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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 7 months ago
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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

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A MyHemophiliaTeam Member said:

Oh I had terrible periods some times they last 2 weeks sometimes I have two a month and I have Von Willebrand

posted 5 months ago
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Anyone else have a qualitative platelet disorder and factor 1 hemophilia?

Anyone else have a qualitative platelet disorder and factor 1 hemophilia?

My son was diagnosed at age 6 with a qualitative platelet disorder. His platelets are missing the mechanism that causes them to stack. I recently decided his medical records and noticed that when they were doing his blood work for the diagnosis his fibrinogen level was too low also but they never told me that. Could this mean that he is also a factor 1 hemophiliac... or am I over reacting?

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Top Hematologist in NYC

Top Hematologist in NYC

I have von Willebrand’s Disease type 2b. Since I had a partial hysterectomy my platelets have been extremely low (as low as 23000). I need a second opinion on why my platelets will not increase. Can anyone recommend a very very good hematology in NYC.

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A MyHemophiliaTeam Member said:

Sory im the stupied one i dont go to da Dr.

posted 10 months ago
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