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My Sister Needs Help with Her Narcolepsy

My sister has extreme symptoms of narcolepsy, sudden collapse of muscles, and falling to the ground, the worst of them all is affecting her speech functions.

A few months after being diagnosed she cant speak anymore. She might need to study sign language, I need advice guys, she cant be the only one.

  1. Hey hun. I'm so sorry to hear about your sister's condition, that sounds so unbelievably hard to deal with. I can't even imagine. I'll be honest with you, this is definitely the first case that I had heard of that is that bad but I am no expert and have only been in the community for a year. I'm sorry if this is a stupid question but are they absolutely sure that she has a correct diagnosis? What do the doctors say about it? Once again, I'm so sorry about what your family is going through and I wish you guys all the best in the world! Take care, Iris xxx

    1. Oh wow that sounds like a very long and difficult journey. I'm sorry to hear that. That's definitely one of the worst cases I've ever heard. Please know that you can find support here whenever you need it. I'm always open to speaking privately if you would like also. I wish you guys all the very best. Take care, Iris xxx

    2. @icona I am so sorry to hear that your sister is experiencing these symptoms. It must be so scary to not be able to control the situation, for herself and those around her. I am hearing impaired and find that ASL is extremely helpful for accessibility. It is also a beautiful language. Please take care of yourself and reach out to our community when you feel so inclined! Best regards, Tatiana (narcolepsy.sleep-disorders.net Team Member)

  2. yes she has,but it hasnt impacted in any way useful at the moment,she just keeps getting worse...thank u

    1. Hi , I am sorry to hear about what your sister is experiencing. Sounds like she has cataplexy. Sharing this article with you about cataplexy: https://narcolepsy.sleep-disorders.net/symptoms/cataplexy. Has she been taking any medication for her narcolepsy symptoms? While we are not medical professionals, we are here to provide support and please know we are here for both you and her. Warmly, Kristin (Narcolepsy.Sleep-Disorders.net Team Member)

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