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  I’m With You

  From jjehle June 26, 2008

  thank you so much for the encouragement, and it is wonderful to know someone who is suffering through the same deal. I have recently moved back home to San Diego because i was not able to work or go to school up in Seattle due to the worsening pain and the doctors un-understanding of how much EDS hurts on a daily (more like every second) basis. I have found doctors in California are much more open and willing to do what it takes to for the patient to be able to live a somewhat normal life. Although my PC doc, is flustered on how to treat me...the specialists have been quite nice, along with the local EDNF.org support group. The support group has truly been the best resource in terms of finding the right doctors and having the proper ammunition to deal with them too. They have some great pamphlets on how the doctor should be managing our pain and all the diagnostic tools and risks, if there is not a local group up there, and you are in need of anything like that, please let me know and i will do my best to get the to you ASAP. Hopefully they will come in handy tomorrow when i see the geneticist, and i will finally be treated like a human. Keep up the FIGHT! and much luck. Justin

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