A Rare Mom's Take on Living with Refractory Seizures

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Written By Know Rare Team

האם הנדירה סמנתה דשנס נותנת לנו הצצה מלאה למסע ההורות הייחודי שלה. מההסתגלות ל"נורמלי החדש" של עדות להתקפי הילדה העקשניים ועד לאתגרים הבלתי צפויים של טיפול מקצועי, היא מספרת על המאבקים וההצלחות השונות שהיא מתמודדת איתן מדי יום.

אובחנתם כחולי מחלה נדירה? צרו קשר עם Know Rare בכל עת באמצעות דוא"ל לכתובת support@knowrare.com .

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Blog v2
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Kidney Week 2025: New Research in Preserving Kidney Function
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My Story: Kaya’s Light and the Call to Awareness
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I Am Still Here: A Voice from the Rare Side
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Halloween: Joyful Crip Time 
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Living with Brugada Syndrome: Michael Grivas’ Story
Living with Brugada Syndrome: Michael Grivas’ Story
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Understanding Fatigue in IgAN: Causes and Management
Accepting Help is Hard
Accepting Help is Hard
Choosing What to Care About When Navigating a Rare Disease
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Sharing the Silver Linings of Living with a Rare Disease
Sharing the Silver Linings of Living with a Rare Disease
Worst Thing to Say to Someone Living with a Rare Disease
Worst Thing to Say to Someone Living with a Rare Disease
Why Rare Disease Patients Fight So Hard for Clinical Trials
Why Rare Disease Patients Fight So Hard for Clinical Trials
Having a Rare Disease is a Full-Time Job
Having a Rare Disease is a Full-Time Job
The Waiting Game in a Rare Disease Clinical Trial
The Waiting Game in a Rare Disease Clinical Trial
The Loneliness of a Clinical Trial
The Loneliness of a Clinical Trial
What I Didn’t Know About The Clinical Trial Selection Process
What I Didn’t Know About The Clinical Trial Selection Process
Getting Treatment and Dealing With Insurance
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Caring for the Unseen: Supporting Caregivers of Those with Rare Diseases
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Know Rare Team
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Clinical Trial Paves the Way for a Groundbreaking New Myasthenia Gravis Treatment
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Journaling Your Journey