8

Which advice would you give to someone who has just been diagnosed with Factor V Leiden?

See some advice from people with experience in Factor V Leiden to people who have just been diagnosed with Factor V Leiden

Factor V Leiden advice
6 answers
Learn about your disorder.

Posted May 4, 2017 by Jennifer 1000
Have a good cry. Share the news with those you love so they can support you. Talk openly with Dr. About tour feelings.Live in the moment and be thankful you are there.

Posted May 4, 2017 by Dawn B 1000
Educate yourself. There are still many doctors that don't know a lot about it. Find yourself a good hematologist and read what you can about the mutation. Knowing what medications you can take, what signs to look out for and knowing how to help your doctor help you manage your mutation will make all the difference.

If I had known more about my diagnosis in the beginning I could have been more aware of my diet and not spent so much time trying to figure out why my inr kept changing so drastically.

Posted May 11, 2017 by Stacy 2650
It's not the end of the world! It is manageable, and you can live a happy lot life with this diagnosis. Just relax! And take it one step at a time.

Posted May 16, 2017 by Rachael 1000
This is the people that just got diagnosed with Factor V Leiden the one thing you need to know is don't panic most people get one or two and that's it their entire life maybe you don't have to take anticoagulants your entire life. Keep in contact with the hematologist your primary care maybe a vascular surgeon if you do get clots a lot in the lower extremities but don't panic panicking only causes problems stay calm educate yourself read up on what factor V Leiden is how it is passed on from a parent and the statistics on how Factor V Leiden is 1 in 100,000 people in your chances are 8 to 10% higher than somebody that doesn't have the gene mutation to get a clot that is not that bad

Posted Dec 28, 2017 by Timothy Andrew McDonough 850
The initial scare of the whole diagnoses will subside but never really goes away. Sometimes I feel like a ticking time bomb but you must have faith in your doctors and the good Lord to get thru it on a daily basis.

People will give you advise but the best thing I would suggest is to find a good forum and read similar stories. Those stories were very helpful for me: https://www.stoptheclot.org/category/stories/patient-stories

I also found some Facebook pages where the members share this common diagnosis: https://www.facebook.com/groups/48402920923/

Posted Dec 28, 2017 by Barbara 4050

Factor V Leiden advice

Factor V Leiden life expectancy

What is the life expectancy of someone with Factor V Leiden?

9 answers
Is Factor V Leiden contagious?

Is Factor V Leiden contagious?

5 answers
Celebrities with Factor V Leiden

Celebrities with Factor V Leiden

1 answer
Is Factor V Leiden hereditary?

Is Factor V Leiden hereditary?

5 answers
ICD9 and ICD10 codes of Factor V Leiden

ICD10 code of Factor V Leiden and ICD9 code

3 answers
Natural treatment of Factor V Leiden

Is there any natural treatment for Factor V Leiden?

3 answers
Living with Factor V Leiden

Living with Factor V Leiden. How to live with Factor V Leiden?

6 answers
Factor V Leiden symptoms

Which are the symptoms of Factor V Leiden?

9 answers

World map of Factor V Leiden

Find people with Factor V Leiden through the map. Connect with them and share experiences. Join the Factor V Leiden community.

Stories of Factor V Leiden

FACTOR V LEIDEN STORIES
Factor V Leiden stories
I was diagnosed in 2001 after a series of TIA's and a smart neurologist who suspected there was something more to be investigated since I had a history of DVT's and my mother's family has had numerous blood clots.  Since then I was also diagnosed w...
Factor V Leiden stories
My name is MARTIN R. LEMIEUX, and for over 20 years now I’ve survived five DVTS – BLOOD CLOTS in my left leg, one clot in my right leg, and another clot in my left pelvic area. As if that wasn’t enough, I’ve also had to manage three massive c...
Factor V Leiden stories
I WAS DIAGNOSED IN MARCH OF THIS YEAR AFTER HAVING MY 2ND PULMONARY EMBOLISM.  THE DOCTORS COULD NOT FIGURE OUT WHERE MY BLOOD CLOTS WERE COMING FROM SINCE I DID NOT HAVE ANY DVT'S.  I HAVE BOTH GENES, SO I WILL BE ON BLOOD THINNERS THE REST OF MY ...
Factor V Leiden stories
In the spring of 2010, I was working and felt that it was a little difficult to bend my right knee / walk - I felt very little swelling / heat so I thought little of it, especially in light of a prior history of having knee problems in that same leg....
Factor V Leiden stories
First two DVT's unprovoked except for the flu.  Hypo-Thyroid too.  On coumadin first, too many side affects, now on Xarelto.  Tried all natural blood thinners didn't help.  Now on Xarelto and natural blood thinners. Still don't bruise, but little...

Tell your story and help others

Tell my story

Factor V Leiden forum

FACTOR V LEIDEN FORUM

Ask a question and get answers from other users.

Ask a question

Find your symptoms soulmates

From now on you can add your symptoms in diseasemaps and find your symptoms soulmates. Symptoms soulmates are people with similar symptoms to you.

Symptoms soulmates

Add your symptoms and discover your soulmates map

Soulmates map