Welcome! Please Introduce Yourself
Welcome to our community! We’d love to learn a little about what has brought you here. Share as much or as little as you'd like.
What about NORD? What is it?
Hi
. NORD is the National Organization for Rare Disorders. They have a patient assistance program that can help cover medications for those who qualify. Here is a link: https://rarediseases.org/patient-assistance-programs/. I hope this helps. - Lori (Team Member)
Hi everyone! I am looking forward to this IH-specific community.
I was diagnosed in 2023 after 20+ years of living with IH symptoms. I eventually lost my corporate job a few months later, having been out on sick leave too long without a doctor who could help me manage my symptoms.
My mom, an OB/GYN who had to retired early due to her IH symptoms (and other comorbidities), was originally diagnosed with narcolepsy type 2 in the early 2000a (and, later, diagnosed with IH for years, and then about 2 years ago had a negative MSLT, so currently has "no diagnosis" -- and no treatment plan).
I am hoping to continue learning about how life can still be a joy, how to deal with the fried associated with the loss of aspects of myself, and how to speak for and with others about hypersomnolence as an invisible condition.
Thanks!Thanks, welcome! Appreciate you sharing your story. I am so glad that you finally got a diagnosis after such a long stretch. I imagine it was a relief to know what specifically was ailing you after 2 decades. This community is here from you - if you ever have any specific questions, happy to help. I am wishing you some support as well related to the job loss as well.
Warmly,
Reggie, Idiopathic-hypersomnia.net team member
What about the organization, NORD? They sometimes pay the copay for sodium oxibate.
Hi thanks for this suggestion! Just a quick note that you can tag members by using the "at" symbol (I did this for you here to tag . Appreciate you sharing! Warmly, Reggie - Idiopathic-hypersomnia.net team member
What about the organization NORD? They might pay the copay for sodium oxibate. Worth a try?
Thanks for sharing! Here is a link to the NORD patient assitance page for those who are interested: https://rarediseases.org/patient-assistance-programs/. . Best wishes. - Lori (Team Member)
