Explaining to others
NDM is a rare disease, which only affects around 1 in every 100,000 people worldwide,1 and can take several years to be diagnosed.2 Consequently, people around you may never have heard of your condition and may not understand some of the challenges you face.
People with NDM experience myotonia (muscle stiffness, cramps or locking) during everyday tasks and activities, and may also experience pain and fatigue.1,3 Symptoms usually begin in childhood or early adulthood4 and will continue throughout a person’s life. Therefore, it is important to learn how to talk to people about NDM.
You can download a factsheet on NDM to share with your family, friends, school or employers. The factsheet may help you explain to others that the symptoms you experience are caused by a condition that you have inherited through your genes.
There are strategies to help you manage the symptoms of NDM but these may also need to be discussed with those around you. For example, if you or your child is in school or college, explain to teachers that you may need to “warm up” after sitting still for long periods of time, or that you may need additional help during sports lessons.
Explaining NDM to your employers can open discussions about how to adapt any tasks that you may find difficult and make things easier if you need to attend medical appointments.
- Hahn C, Salajegheh MK. Iran J Neurol 2016;15:46–53
- Vereb N. J Neurol. 2021; 268(5): 1708–1720
- Trip J, et al. J Neurol 2009;256:939–947
- Matthews E, et al. Pract Neurol 2021;0:1-10
UK-NDM-2202-00012 February 2022