NA patients come from all walks of life and all corners of the globe, but have one thing in common: the feeling of helplessness when first diagnosed. Many things about NA are overwhelming: there are so few cases, little is known about how the genetic mutations bring on such severe physical problems and there are no definite conclusions as to the effectiveness of drugs and other therapies.
So what can you do if you are diagnosed?
Contact the Advocacy
The Advocacy aims to provide up-to-date information and one-on-one communication with patients and their families and caregivers. Please contact us and we will endeavour to answer your questions or refer you to the person you need to contact.
Reach out to Other Patients
Share your experiences on the Rare Disease Neuroacanthocytosis platform or Facebook. You can also set up your own Facebook group, write a blog or connect with the world on Instagram.
Share Therapies that Work for You
Whether you write to us here at NA or share your experiences online, we want to hear from you if there are techniques, assistive technologies, or other advice you can offer to other patients dealing with common problems like communication, eating and exercise.
Keep as Active As Possible
Continual work with physio, occupational and speech therapists can help maintain your ability to do as much as you can for yourself.
Keep a Patient’s Diary
Record how your condition changes.
Please share the diary with us. A comprehensive collection of case records is invaluable to researchers.
Keep Your Doctor Informed
We are a small community. This makes all patients and their families as well as their doctors the keys to progress. Encourage your doctor to sign up for NA News, and to stay as informed as possible about developments in research into the basal ganglia, the area of the brain affected by NA. The more people talk and know about NA, the greater our chances of ultimately defeating it.