Why NARCOLEPSY: NOT ALONE Matters…
Why NARCOLEPSY: NOT ALONE matters:
“You have touched my daughter in a way I don’t believe I could ever to make her feel. To see her excitement passing out the bracelets, sharing that she has narcolepsy and cataplexy and she’s PROUD, it’s such a great change for her.” -Karen, Kenya’s Mom
“I just got my shirt in the mail and started balling. I’ve been officially diagnosed for 4 years, I have felt so alone, unable to relate to anyone about the daily fight. I recently found your inspiring site. Its one thing to see your site and to feel the hope it filled me with, but receiving my t-shirt made it reality, tangible, real. Thank you for having the courage to stand up. I am behind you Julie!” -Nikki
1 in 2,000 have narcolepsy, but everyone can help raise awareness.
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Awareness Bracelets
NARCOLEPSY: NOT ALONE Ladies Tees
Julie,
I have recently read your book, I took am around the same age as you ( 32, I think that’s about the same ) and from Boston area and also went through very similar circumstances as you. After reading through the book I begged my family to read it as well so that they could understand what both of us have gone through and continue to go through. I bought it for my mom and she read it over the last few days and told my sister about it and she bought it for herself, I’m so glad that there is a resource like this out there because I could never put in words what I have experienced, however you are gifted in that area. My experience was very confusing as I am epileptic as well, reading your book however helped me to draw the differences between the two disorders, as my doctors have not been all that helpful. My mom even showed me this site and blog. I am so excited that you are advocating for narcolepsy, it has helped me so much. Thank You,
Phillip Satkowski
I have a 7 year old daughter with newly diagnosed narcolepsy. At first doctors said autism, then further test resulted in narcolepsy. Her neurologist says “I’m not a sleep doctor, but take these pills it may help” lol WHAT! We are waiting for an appointment with a new doctor. Gabby has been in kindergarten for two years, with not a lot of success. She falls asleep at her desk, singing in school performances, on the bus and at the dinner table. I’m going to start your book ASAP. I strive to help us understand and learn to live with this. Thanks for speaking out.