factor v deficiency
Posted by
cuzisaidsoma
Hi! I am really new to Well Sphere. I have a recently diagnosed disease called factor v deficiency.
I have had a lot of trouble finding info out on it since it is a 1 in 1 million frequency. No one seems to research or talk about or even know much about it.
I know what it is... I have read the same 16 lines on all 100 websites. I just still have a 100 questions. My own doctor and my hemotologist don't seem to know much either.
I think I have joint bleeds... how can I tell?
Is it progressive? Does it get worse as I get older?
Why am I not being treated actively for it? "call us if you need us"
When do I need a doctor for bleeding?
Are there times when it is more or less severe? Can I have an "episode"
What is the diff between aquired factor v deficiency and genetic. How do I know which I have?
I doubt I will get answers here, but I hope someone can help! I realize there are only 150 diagnosed cases of it since 1943 but I am sure there are other tech saavy people out there just as puzzled as I am.
Wow 3 days and no response... I knew I was rare!
Now it has been almost 2 weeks... still no answer :-(
Posted by cuzisaidsoma
Hi! I am really new to Well Sphere. I have a recently diagnosed disease called factor v deficiency.
I have had a lot of trouble finding info out on it since it is a 1 in 1 million frequency. No one seems to research or talk about or even know much about it.
I know what it is... I have read the same 16 lines on all 100 websites. I just still have a 100 questions. My own doctor and my hemotologist don't seem to know much either.
I think I have joint bleeds... how can I tell?
Is it progressive? Does it get worse as I get older?
Why am I not being treated actively for it? "call us if you need us"
When do I need a doctor for bleeding?
Are there times when it is more or less severe? Can I have an "episode"
What is the diff between aquired factor v deficiency and genetic. How do I know which I have?
I doubt I will get answers here, but I hope someone can help! I realize there are only 150 diagnosed cases of it since 1943 but I am sure there are other tech saavy people out there just as puzzled as I am.
Wow 3 days and no response... I knew I was rare!
Now it has been almost 2 weeks... still no answer :-(