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Lori Dunham replied to the topic Hello, just diagnosed. in the forum Introductions 1 week, 3 days ago
Hi Tim. Our daughter was diagnosed with LEMS at age 15. She did have a flu shot a few weeks before she started exhibiting symptoms of LEMS. Her rheumatologist explained that the flu or flu shot could trigger an overactive immune response, leading to symptoms of LEMS. Of course we don’t know for sure, but I definitely saw the correlation in my…[Read more]
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Lori Dunham replied to the topic Walking with LEMS (video) in the forum Living With LEMS 4 months, 1 week ago
Love seeing This Price!!! Thank you for sharing.
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Lori Dunham replied to the topic Do you have any family history of LEMS? in the forum Diagnosed- What now? 5 months ago
Hi Heather. My name is Lori Dunham and my daughter was diagnosed with LEMS at 15 (started showing symptoms at 14) so I have an idea of what you are going through. If you would like, we could touch base privately. I’m happy to talk or message. Where do you live?
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Lori Dunham replied to the topic Yup, Another Trip to the ER in the forum Living With LEMS 1 year, 3 months ago
I’m glad you were able to be released later that night and everything was good. This is a good reminder for all of us to not let unusual symptoms go without seeking medical attention.
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Lori Dunham replied to the topic Sleeping with LEMS in the forum General Questions and Topics 1 year, 3 months ago
Ashley, thanks for sharing your experience and tricks with all the differing sleep problems that come with LEMS. For us, it’s been kind of a trial and error process so I love hearing what helps other people.
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Lori Dunham replied to the topic LEMS social recap! in the forum LEMS Community Zoom Socials 1 year, 5 months ago
Loved getting to know you all and hear your stories.
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Lori Dunham replied to the topic Meet & Greet Social TOMORROW! in the forum LEMS Community Zoom Socials 1 year, 5 months ago
I will be there! Looking forward to it!
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Lori Dunham replied to the topic Global Genes Rare Disease Summit 2021! in the forum Living With LEMS 1 year, 6 months ago
Thank you Dawn for sharing this information. It looks like a worthwhile use of our time.
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Lori Dunham replied to the topic Next LEMS October Social Date and Time, and a reflection in the forum LEMS Community Zoom Socials 1 year, 6 months ago
Looking forward to the next Zoom meeting in October. Grace and I enjoyed “meeting” all of you that could join in on the call. We have never met any LEMS patients in person so this is the next best thing until that could happen. It really encouraged Grace to see other people like her. It was a blessing to me as well! We missed you Price and look…[Read more]
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Lori Dunham replied to the topic LEMS Zoom Social September 2021 in the forum Living With LEMS 1 year, 6 months ago
Looking forward to it! See you all then.
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Lori Dunham replied to the topic Talking About LEMS, My Guest Spot on Podcast! in the forum Flash Briefings 1 year, 7 months ago
Wonderfully done!!!!
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Lori Dunham replied to the topic LEMS Community Zoom Meet and Greet in the forum General Questions and Topics 1 year, 8 months ago
I will plan to be there!!! Thank you. It’s a great idea.
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Lori Dunham replied to the topic Roll call! in the forum Introductions 1 year, 11 months ago
Our daughter Grace, age 16, was diagnosed two years ago. We live in Jacksonville Florida.
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Lori Dunham replied to the topic Making accommodations to make life with chronic illness easier in the forum Living With LEMS 1 year, 11 months ago
I’d love to hear some of the things other people do to make life a bit easier!!
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Lori Dunham replied to the topic Reading helps us cope with LEMS in the forum Living With LEMS 1 year, 11 months ago
I love historical fiction as well. I am trying to add some classics in as well but that is a little harder to do.
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Lori Dunham replied to the topic The Case For Time Release Firdapse in the forum Amifampridine (Firdapse and Ruzurgi) 1 year, 11 months ago
This is a great step in the right direction. Grace does not take the time release mestinon yet but I’d like to ask about it at her next neurology appt. I hope it could help her a bit throughout the night and first thing in the am.
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Lori Dunham replied to the topic The Case For Time Release Firdapse in the forum Amifampridine (Firdapse and Ruzurgi) 1 year, 11 months ago
I think that would be amazing! Grace has extreme weakness in the morning because her last dose of rizurgi is at 6pm the night before. A time release pill would be a game changer!!!
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Lori Dunham replied to the topic What does a good day look like for you? in the forum General Questions and Topics 1 year, 11 months ago
Great questions Ashley! I would love to hear everyone’s answers. For Grace, it’s the days she is able to do “normal” teenage activities like going to the mall or doing something with friends. On these days, I see a lightness to her that is so beautiful to see as her mom. Like, for a little while, the burden has been lifted.
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Lori Dunham replied to the topic Rituxan for LEMS, a good report in the forum Immunosuppression 2 years ago
Thanks Price. You always do such a good job!!! Rituxman has done wonders for Grace.
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Lori Dunham replied to the topic Just three more days until Rare Disease Day! in the forum General Questions and Topics 2 years ago
Hi Ashley. We are passionate about raising awareness as well!!! We all have a voice and message that matters!!!! Thank you for this very important reminder.
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