Dealing with Diagnosis

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?

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.

Contact the Advocacy for Information and Emotional Support

The Advocacy offers one-on-one communication with patients and their families and caregivers in the form of telephone calls and emails. Another important part of our work is to provide you with up-to-date information  Please contact us and we will endeavour to answer your questions or refer you to the person you need to contact.

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.

Stay 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 for as long as you can.

Write a Patient’s Diary

Keep track of your daily life and the developments in your disease.

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.