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An AE Story

An AE Story

 

February 15, 2017

 

To my valentine, husband or wife, partner, parent, child, sibling, other family member, friend, or paid caregiver this is a love letter to you.

Thank you for your care giving and your support. From the shopping trip to help with bathing care we understand that our needs are first in your minds and hearts no matter what you had planned.

We try to keep our needs to a minimum. We struggle to be independent so we don’t have to interrupt what you are doing but know our limitations and that many times we have to start a conversation with “I’m sorry dear but could you….”.

This disorder is frustrating to live with but often we forget how frustrating it can be for you. We hear it in you voice when our faulty memories cause us to ask the same question multiple times and yet you answer kindly again. We see it in your eyes when we are in pain and you don’t know how to help. We hear your sigh when yet another doctor fails to grasp the situation and we leave the office with all our symptoms and no hope for relief. We know you share our frustration at trying to make sense of research papers, insurance denials, changing diagnosis and yet another doctor.

For being there when we are stressed and that calming hug or hand on a shoulder we love and thank you. And for your tolerance of our mood changes, our moments of unreality and for fighting for us during psychotic episodes.

We love you for all these reasons and so much more. We don’t have to ask “do you love me” you are here.

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Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

CONTACT US


352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

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