If you need medical advice, you can look for doctors or other healthcare professionals who have experience with this disease. You may find these specialists through advocacy organizations, clinical trials, or articles published in medical journals. You may also want to contact a university or tertiary medical center in your area, because these centers tend to see more complex cases and have the latest technology and treatments.
If you can’t find a specialist in your local area, try contacting national or international specialists. They may be able to refer you to someone they know through conferences or research efforts. Some specialists may be willing to consult with you or your local doctors over the phone or by email if you can't travel to them for care.
You can find more tips in our guide, How to Find a Disease Specialist. We also encourage you to explore the rest of this page to find resources that can help you find specialists.
Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question
I was diagnosed with factor V Leiden before I got pregnant. I am currently 38 weeks pregnant, and have never had a miscarriage nor have I had any VTE events. Even though I am only heterozygous and never had a clotting event before, it is apparently recommended that I be induced at 39 weeks. Who recommends this? Is the risk that high for a person to have to be induced at 39 weeks for a person who has never had a thrombotic event before? See answer
My sister has factor V Leiden, but I do not. Does this mean we are half sisters? There is some question regarding my sister's parentage. See answer
How does factor V Leiden affect a diabetic person (type 1)? What is the link between elevated Activated Protein C and Factor V Leiden? Are there symptoms that would indicate if a person has a clot? Are there any treatments? See answer
I have been diagnosed with Factor 5 Leiden. Is it unusual that I bruise easily? I would have expected the opposite. I have been tested twice so I know the diagnosis must be correct. See answer
Factor V Leiden runs in my family. My sister is now battling acute promyelocytic leukemia. Are these two conditions issues linked? Can Factor V Leiden bring on leukemia? Are they related in any way, shape, or form? See answer
Wondering if there is a connection between factor V Leiden and breast cancer? I have read that many people with breast cancer have factor V Leiden, but wondering which came first? I have asked many people and no one seems to have the answer. See answer
I am heterozygous for a factor V Leiden mutation. I was on oral contraceptives for 10 years before trying to get pregnant. After two miscarriages, I was tested and I found out that I had this condition. I saw where you discuss oral contraceptives; but I didn't know if an IUD such as Mirena may be safer to use than an oral contraceptives? See answer
I have factor V Leiden and was wondering if it's safe to use oral contraceptives. I want to take the pill called Levlin. See answer
What is the name of the test that would be used to diagnose this condition? Is there more than one test? Most importantly, how accurate is this test for both positive and negative results? See answer
I was recently diagnosed with factor V Leiden. It was found when I needed surgery on my right ankle, which just broke without injury. I was on Coumadin, a blood thinner. Then two months after surgery, my left ankle broke in the same exact spot again just from being on crutches. The same bone broke at the exact spot on both ankles, so I started asking questions. My orthopedic surgeon said because of the factor V Leiden I was getting blood clots in the capillaries going to that section of my bone. The effect was of course bone death and breakage. I would like to know if my doctor's claims could be plausible. See answer
My grandmother on my dad's side has two copies of the factor V Leiden gene mutation. I have one copy. Do I need to go and see a hematologist to get on blood thinners, or is there really nothing that they would do since I only have the one copy? Also, if I have one copy does that mean that my father has two copies of it or could he possibly have only the one copy as well? See answer
My husband has factor V Leiden. How could he have this when nobody else in his family has it including his parents? Is this disorder always passed down or can it skip a generation? What is the chance that our kids will have it? See answer