Hemophilia

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7 medium

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 about 1 month ago
1 medium

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 about 2 months ago
A MyHemophiliaTeam Member said:

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

posted about 2 months ago
2 medium

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 about 2 months ago
A MyHemophiliaTeam Member said:

Yes mine do all the time.

posted about 2 months ago
4 medium

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 about 2 months ago
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 about 2 months ago
4 medium

Is there anyone that would recommend a supplement insurance for copay and etc.?

Looking for help with copay and supplement insurance similar to Aflac or etc.? Anyone have any suggestions out there? Thanks

posted 4 months ago
A MyHemophiliaTeam Member said:

My State has a hemophilia program sign up every year.

posted 3 months ago
7 medium

I am pregnant and have a Factor 7 deficiency. Any Factor 7 ladies have advice for a safe pregnancy and delivery?

posted 4 months ago
A MyHemophiliaTeam Member said:

You are very welcome! I did have a natural birth but the pain was rough, they wouldn’t give me anything for the contractions. Also, for post birth, make… read more

posted 4 months ago
2 medium

Why no blood testing????

Since 1996 I have only had my blood timed to see how long it takes to stop bleeding. Should'nt the doctors have done other tests to find out about factors and other things?

posted 5 months ago
A MyHemophiliaTeam Member said:

Same here

posted 3 months ago
0 medium

How is ankyloglossia managed for an infant's feeding if a bleeding disorder is diagnosed?

Would cauterization be the procedure to get the baby's tongue in milking condition?

posted 5 months ago
5 medium

Is ok to use a topical anti inflammatory?

posted 5 months ago
A MyHemophiliaTeam Member said:

I use Diclofenac cream with no problems. I can take small doses of NSAIDS infrequently, but they don't "sit well" with my guts...and they REALLY cause… read more

posted 4 months ago
4 medium

Need help finding others with the same very rare coag profile

Recently encountered a 6 year old kid that has the following coagulation profile...Severe F8 deficiency, very mild F9 deficiency and a low titer F8 inhibitor...does anyone else have the same profile???

posted 5 months ago
A MyHemophiliaTeam Member said:

My son is 6mo old with f8 severe. I am 30 with f8 moderate, low vw but so far he has no inhibitor but i have no inhibitor perse but no tolerance to read more

posted 5 months ago
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