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ikho1967

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About ikho1967

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    ChattyCushie
  • Birthday 01/08/1967

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  • Location
    Just outside Boston MA
  1. I did hear good things about it from an Oregon patient who was in the initial study and have heard that another high profile neuro endo finds it promising too. But like everyone says, the long term effects are unknown. But maybe if this one isn't it, it could hold someone over until the "real deal" comes along??? Difficult choices. Also, I don't know if this still holds true, but in the last pass made cyclics could not be on it... maybe that has changed? Best, Lisa E.
  2. Ok Robin... Sign me up. :.) I usually am good at talking a lot--maybe too skilled at it... lol Just these days I forget where I'm at...lol... So I'm thinking you might get a little better interview in a couple of months. So if you get some more takers I'll def. let them go first. :.)
  3. Hey Mary, I think the voice chats are awesome. I would like to participate, but I am not on my game right now. I wouldn't mind being stuck on the end of the schedule though. Maybe by June I'll be a bit more up for it. Hope so.
  4. Cindy that is awesome news. You'll be helping others for years and years to come! :.) And what an incredible email. I am always impressed how thorough he is and so welcoming in his tone. I so hope all this is resolved ASAP. I know it is awful to have extra stuff post op. I managed to go hyperthyroid with Graves Disease and that really hampered my recovery. Seems that all of us end up having something to tackle post op alright. But I can tell you now I am starting to do lots better and I am seeing a big difference. I hope it is like this for you too... you get all this behind yo
  5. Interesting stuff... Also, Cushing's damages the hippocampal region of the brain due to all the cortisol floating around. That is why we have issues with memory and concentration etc. It takes lots of time to come back, but it does recover... I think just not fully. But who knows... maybe that differs with duration of disease and age, etc.
  6. Here is a format I googled... it is pretty good. You really want to keep it to one page and focus on a hook... not the whole story... rather a piece of the story. And write it in article form rather than old fashioned press release style. Also, the press release I wrote with OHSU is under Mary O's Lisa E. in the news. (Thanks Mary :.) I think I'd figure a pregnancy/rare disease angle. Good luck, Lisa E.
  7. That's awesome news Judy. :.) Way to go! :.) You are going to save somebody's life. :.)Judy, my best guess is that the big paper would be very interested.
  8. Awesome booth Jayne! :.) Really, really nice. And good for you guys Judy, Justin and Jess. Hope it is one very successful day. :.) You know... this is a media worthy event. :.) Maybe someone could call a health reporter and say you'll be there tomorrow with the times... and stress you have 3 family members with Cushing's, rare disease and that you have a health booth to inform people about Cushing's... I bet they'd pick up the story in a heart beat and the booth would be a great backdrop for the news piece... You could try a couple big papers and a news station or two maybe...
  9. Kudos to you Gumdrop! What a great idea to contact a relative. :.) Doesn't matter if it works or not... that was a brilliant idea. :.) I'm hoping it will pan out.
  10. Thank you for replying to me about blood clots so I can take the precautions and I know what to look for. I am glad you are doing well. I have just begun the journey. Thanks for your help(0:

  11. That is awesome! Thanks for sharing the article Robin. I hope there are many, many more to come. :.)
  12. Yay!!! Really is great when one of us gets into the media. Self diagnosis will be the only route for many patients and Reader's Digest reaches so many people. How exciting!
  13. Aw, thanks Kathy... And thanks MaryO for posting this. The site truly is a lifesaver and I see a few newbies have already found us thanks to the article. For those that may not know, I'm Lisa Eldridge in the article, Karen is roon here on the board and Jaimie, is well, our adorable Jaimie...
  14. Sounds like a pheo... would have been good to get the name in as well and the signs to watch out for...
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