Hemophilia

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3 medium

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

posted 26 days ago
5 medium

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

posted 28 days ago
3 mini
A MyHemophiliaTeam Member said:

I have chronic pain in both replacement knees. I have 6 pins in my ankle, chronic pain there too.

posted 9 days ago
2 medium

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

posted 3 months ago
0 mini
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 2 months ago
9 medium

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?

edited, originally posted 3 months ago
4 mini
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 3 months ago
7 medium

Does VwD and Anemia go hand in hand?

Does VwD and Anemia go hand in hand?

posted 3 months ago
5 mini
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 3 months ago
2 medium

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

posted 4 months ago
5 mini
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 28 days ago
7 medium

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?

posted 5 months ago
1 medium

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.

posted 6 months ago
1 mini
A MyHemophiliaTeam Member said:

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

posted 6 months ago
2 medium

Spontaneous black and blues

Spontaneous black and blues

I have what appears to be blood vessels that break spontaneously in my fingers and feet. It burns for a while and then a black and blue mark appears. is this common in people with Von Willobrands Disorder?

posted 6 months ago
5 mini
A MyHemophiliaTeam Member said:

I have on Wilton brands disease, but genetic testing showed high likely hood of Ehlers Danlos syndrome, anybody have severe problems with turning purple… read more

posted 3 months ago
4 medium

Are there any severe hemophilia A women out there?

Are there any severe hemophilia A women out there?

My six-year-old daughter has severe hemophilia A, which we all know is extremely rare. So I’m looking to connect with women who are in the same position. As my daughter gets older, she’s starting to ask more questions about her condition and I would love to be a bit more prepared to answer her questions, and share experience from those with first hand experience managing hemophilia as a woman.

posted 6 months ago
0 mini
A MyHemophiliaTeam Member said:

I have a niece who has mild hemophilia factor 8 she's in her late twenties and has 3 children, with one son who also has factor 8 deficiency.

posted 6 months ago
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