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Old 03-16-2011, 10:41 PM   #1
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PeachBlossom HB User
Factor 5 Deficiency!

Hello!
As this disorder is too rare i am looking for anyone who might have it

 
Old 03-19-2011, 02:18 PM   #2
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binx HB User
Re: Factor 5 Deficiency!

hi there,

are you talking about factor v leiden?

if so, i was just diagnosed with it yesterday after having suffered a DVT post-surgery.

best wishes,
binx

 
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Old 03-19-2011, 02:23 PM   #3
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Re: Factor 5 Deficiency!

oh feel good soon binx! and stay away from the birth pill(that is if youre female...)

no, im talking about the bleeding disorder factor V deficiency, the exact opposite. im the only one in my country with this and docs dont know much about it. depressing.

 
Old 04-06-2011, 11:53 AM   #4
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Re: Factor 5 Deficiency!

Hi peachblossom & binx

i to have factor 5 i have been diagnosed with it since i was 20 years old, I am now 38. Binx what is it your talking about?

Last edited by fostermom6; 04-06-2011 at 11:55 AM.

 
Old 04-06-2011, 12:08 PM   #5
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Re: Factor 5 Deficiency!

Hey fostermom,
i guess you have a mild form of it? what is your experience with it?

 
Old 04-06-2011, 12:14 PM   #6
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Re: Factor 5 Deficiency!

Hi peachblossom

Mine is far from mild it almost killed me when i gave birth to my son 16 years ago had to have a filter put in and went months in a wheel chair due to the clots. Not fun I have been on a high dose of blood thinner all these years my dose never goes under 10 mg most time it alternates from 10-20mg. I have blood check weekely often it maybe checked twice a week. I have recently had blood clots again in the past 8 months its horrible cause it has caused damage in my legs and keeps me from my use to everyday life of going to the gym. Thats me in a nut shell, hope yours is better!

 
Old 04-06-2011, 05:07 PM   #7
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binx HB User
Re: Factor 5 Deficiency!

hi fostermom,

i have factor v leiden which is a genetic hyper-coagulation disorder. i have been on coumadin therapy since december when i developed 2 DVTs after cervical spine surgery. from what i understand, factor v leiden is the most common hyper-coagulation disorder in the general population.

yes, i sure do love being one of the crowd! (hardly).

i'm sorry to hear about your issues with your clotting during pregnancy and recent issues. i didn't have any problems when i was pregnant, but my sister had a massive DVT in her thigh during her first pregnancy. she had to give herself lovenox injections in her abdomen during her second pregnancy.

blessings to you,
binx

Last edited by binx; 04-06-2011 at 05:09 PM. Reason: typo

 
Old 04-06-2011, 11:37 PM   #8
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Re: Factor 5 Deficiency!

hey fostermom,
i have the exact opposite. blood doesnt clot. bleeds,bruises, etc my factor is deficient.

 
Old 06-11-2011, 01:07 AM   #9
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RysinToRize HB User
Re: Factor 5 Deficiency!

Quote:
Originally Posted by PeachBlossom View Post
Hello!
As this disorder is too rare i am looking for anyone who might have it
Hello,

My son was diagnosed with sever Factor V Deficiency when he was born. He is now 1 and a half years old. doctors didn't then (and now) have answers to our questions. However, my son is doing well and we are just alittle bit over protective. My faith (Islam) has given me a great amount of patience as this disorder can be very frustrating since you really cant find answers from the doctors. I would love to hear about your lifestyle and if there is any insight you can provide for me to be wary of.

 
Old 06-13-2011, 07:37 AM   #10
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Re: Factor 5 Deficiency!

Good morning, I am happy to hear your son is doing well. My prayers are with him. I have learned their are a few disorders under factor 5, one where the blood won't clot and one where the blood is to thick an clots so bad that it causes major health issues. I have the one where my blood like to clot bad and have had it for 17 years. I am on a very high dose of blood thinner medication and am seen almost weekly for blood work. As for my life style i have to be careful eating certain foods that will mess with the medication and exercise daily. Due to medication I have to becareful of cuts because I will bleed alot. Hope this helps, again my prayers are with your little one.

 
Old 07-12-2011, 05:26 AM   #11
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camillec HB User
Re: Factor 5 Deficiency!

i have been diagnose since feb 2011 i developed ischemic colitis the gi doc said he is consulting with a hematologist and after labs is shown i have this. 1 copy (heterozygous) not on any thinners. i was told to seek a 2nd opinion and this doc did more tests and not only do i have this i also am positive for whatever test this is MTHFR 1 copy and heterozygous as well. i got the results online and i am calling this doctor for apt to follow up regarding this. how is this being managed?
camille

 
Old 08-15-2011, 10:41 AM   #12
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Re: Factor 5 Deficiency!

Quote:
Originally Posted by PeachBlossom View Post
Hello!
As this disorder is too rare i am looking for anyone who might have it
My fiancé had a DVT in 2008 in left thigh. He was treated with heparin and lovenox then on Coumadin. 1 week later had PE. Was in the hospital for 10 days on IV and released on Coumadin. INR stayed low developed another DVT and was sent to Hematologist and tested positive for factor V. He has since developed additional blood clots and they keep running a bunch of tests to find out why, with no luck so far. But since his problem we have encountered that Factor V is not that uncommon.



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Old 08-16-2011, 02:17 AM   #13
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Re: Factor 5 Deficiency!

hey guys,

thank you all for your replies, but i am talking about the deficiency. It's a bleeding disorder.
Having low factor 5 you have the tendency to bleed. Not t have DVT or clots.
Obviously, i do wish all of you the best with factor 5. I am just looking for the opposite disorder.

 
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