Community Forum

Research about Juvenile Myoclonic Epilepsy

Hi!
My name is Amber, and I am a student at a college in Louisiana.  I am currently doing some research on Juvenile Myoclonic Epilepsy (JME) and the effects it has on patients with JME.  I am also a patient with JME.  I was diagnosed when I was 13 years old, so this is a very passionate subject for me.  I know just how difficult it can be for someone living with JME, and also how it affects the family.  I would really love to know how each of you (or your children) have experienced a diagnosis of JME.  If you would, please fill out the questionnaire that I have attached to this discussion, and send it back to my email (amber9763@yahoo.com).  Do not put your name on the questionnaire.  Also, none of this information will be linked to any one person in my research.  I am gathering information from a group of individuals, so the information gathered will be used as a result of the whole group.  Please, take your time and really think about these questions and how JME has affected each of you.  Thank you for your time, and I hope that each of you are coping well as a patient of JME. 
Again, if you fill out the questionnaire, please email it to my personal email address (amber9763@yahoo.com) so that your information is not public.
P.S.:  I have never posted anything to this website, so I don't know if my attachment will actually be seen.  If it does not and you would be kind enough to fill out this questionnaire, please email me and I will send you a copy of the questionnaire.  Thank you for your time and cooperation!

Comments

Both my children have JME>  My son is now 20 and my daughter 16.  Both started at 15. WHat kind of research are you working on?

joan*

http://health.groups.yahoo.com/group/JuvenileMyoclonicEpilepsy/

Son lamictal 175 2x 19 Grand Mals - Stable Daughter keppra 750 16 Juvenile myclonic - ON MAD since 6/9/09 DOING  GREAT!!!!!weaning partial meds 8/8/09 Both had first issues at 15 - Both JME - gotta love puberty : ) * Both dealing with it*

Can we still participate in the research study? Or is it too late?

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