Rare Diseases Community
Rare Diseases
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This patient support community is for discussions relating to rare diseases and disorders. Some example include: Aarskog syndrome, Acoustic Neuroma, Angelman Syndrome, Behcet Syndrome, Bell’s Palsy, Canavan Disease, Carbon Baby Syndrome, Charcot Marie Tooth Disease, Chromosome Monosomy Disorders, Chromosome Trisomy Disorders, Devic's Disease, Dystonia, Ewing’s Sarcoma, Fragile X Syndrome, Immune Thrombocytopenia, Kawasaki Syndrome,Maple Syrup Urine Disease, Mastocytosis, McCune Albright syndrome, Pachygyria, Polycystic Kidney Disease, Prader-Willi Syndrome, Reiter’s Syndrome, Sickle cell anemia, Sturge-Weber syndrome, Trisomy Disorders, Usher Syndrome, Xanthinuria, Zollinger-Ellison syndrome.

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Rare Diseases

I have a 22 yr old niece who was on accutane off it, year later she had an apendectomy in late July, went on Yaz and two weeks later a blood clot in upper thigh with branches. She was diagnosed with homozygous Factor V Leiden disease.
Question: Does she need to be on coumadin for the rest of her life? I read if the clot is provoked from something ie Yaz..surgery...maybe accutane...that the person can eventually go off the coumadin. It was the spontaneous formation unprovoked clots that cause life time coumadin tx?  What about pradaxa?
Any doctotrs in Philadelphia on the cutting edge of this?
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Hi,
How is your niece? Factor V Leiden is a common inherited genetic disorder that can increase the chance of developing abnormal blood clots. Blood-thinning medications, such as warfarin  or Coumadin as well as heparin or low molecular weight heparin may be indicated to treat people who develop blood clots. The length of treatment usually depends on the circumstances of  the thrombosis. Some treatment will usually last for three to six months, but if there are several clots it could take longer. Still in more severe cases the course of drug treatment may be continued indefinitely. It is best that you discuss this with her doctor for proper management. Pradaxa  or dabigatran is a direct thrombin inhibitor that also helps keep the blood from coagulating. However, discuss this first with her doctor or hematologist prior to taking it. Take care and best regards.
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selmaS
Allentown, PA