NDIAG Family Spotlight – Share Your Rare
We are honored to share your story as part of NDIAG’s “Share Your Rare” spotlight series. Your experience helps bring awareness, education, and visibility to Nephrogenic Diabetes Insipidus (NDI) and the families living with it every day. Thank you for taking the time!
About You / Your Family
Tell us a little about yourself and/or your family
Who in your family is affected by Nephrogenic Diabetes Insipidus (NDI), and how old are they now?
Is NDI congenital or acquired in your case, and at what age was the diagnosis made?
Diagnosis Journey
What symptoms or concerns first made you realize something wasn’t right?
How long did it take to receive an accurate NDI diagnosis?
Were there misdiagnoses or delays, and how did that affect you or your child?
What do you wish had happened differently during the diagnostic process?
Understanding & Awareness of NDI
How was NDI explained to you at the time of diagnosis, and how has your understanding changed since then?
What misconceptions about NDI have you encountered most often?
What do you wish healthcare providers better understood about NDI?
Daily Life With NDI
How does NDI affect daily life (hydration, sleep, diet, school, work, social activities)?
How do you manage constant water loss and risk of dehydration day to day?
What parts of living with NDI are hardest for others to see or understand?
How much planning or vigilance is required just to get through a normal day?
Medical Management & Access to Care
What specialists are involved in your care, and how easy has it been to find providers knowledgeable about NDI?
Have you faced challenges accessing appropriate treatments, medications, or insurance coverage?
How does the lack of at-home monitoring tools for sodium or hydration affect daily management?
What would ideal medical care for NDI look like to you?
Complications & Medical Challenges
What complications related to NDI have you or your loved one experienced?
Have you dealt with hospitalizations or emergencies related to dehydration or electrolyte imbalance?
Yes
No
Not sure
Prefer not to say
What medical concerns or complications worry you most looking ahead?
Emotional & Family Impact
How has living with NDI affected emotional or mental health for the patient and caregiver?
How has NDI impacted your family dynamics or relationships?
Have you ever felt dismissed, misunderstood, or isolated because NDI is rare?
Advocacy & Strengths
What led you to share your story and/or become involved in advocacy?
How has connecting with the NDI or rare disease community impacted you?
Despite challenges, what strengths or resilience have you discovered?
What do you wish the world better understood about NDI?
Final Thoughts
Is there anything else about your NDI journey you’d like to share?
May we share your story publicly through NDIAG (social media, awareness campaigns, etc.)?
*
Yes, with my name
Yes, anonymously
Yes, first name only
No
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