Hemophilia
Questions + Answers
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.
Is there anyone that would recommend a supplement insurance for copay and etc.?
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
I am pregnant and have a Factor 7 deficiency. Any Factor 7 ladies have advice for a safe pregnancy and delivery?
Why no blood testing????
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?
How is ankyloglossia managed for an infant's feeding if a bleeding disorder is diagnosed?
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?
Need help finding others with the same very rare coag profile
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???
I'm wondering does hemophilia cause us to have more intense pain than normal people???? My pain has become almost unbearable at times.
I'm wondering does hemophilia cause us to have more intense pain than normal people???? My pain has become almost unbearable at times.
Isn’t pain relative to the person that feels it. Since I’ve grown up bleeding I don’t try to compare to a “normal” who hasn’t had regular bleeds. I only… read more
I have von Willebrands. I have spontaneous bleeds under the skin. I also have joint pain. Do VWD patients bleed into their joints?
I have von Willebrands. I have spontaneous bleeds under the skin. I also have joint pain. Do VWD patients bleed into their joints?
I have joint bleeding quite often...they cause joint deformities in my hands as well
I am wondering about fatigue with mild VWs.
I am wondering about fatigue with mild VWs.
My VW is mild, so I have not always given it the credit it deserves in causing complications in my life. But I was diagnosed with idiopathic hypersomnia (non REM narcolepsy) several years ago. I found out a year and a half ago I was misdiagnosed and had iatrogenic hypersomnia caused by an antidepressant. I thought I was completely cured when I stopped taking that medication, and my improvement really is a miracle. But I have always been a little more fatigued than the… read more
