You can help unlock the reality of life with NDM by participating in a social experiment designed to assess how a social media hashtag campaign can be used to raise awareness about rare diseases like NDM.
It Only Takes One Share! Just click on #LetsTalkNDM to find out how easy it is to help those living with NDM
What is NDM?
NDM is a group of rare conditions that affects one’s muscles. Only around 1 in 100,000 people worldwide suffer from these conditions, but there are countries where NDM is more common.1 There are several different forms of NDM, with 4 main types commonly known as Becker Myotonia Congenita, Thomsen Myotonia Congenita, Paramyotonia Congenita (Eulenburg) or Hyperkalemic periodic paralysis (hyperPP).1,2
NDM disorders typically affect the muscles, with patients most commonly having an inability to relax muscles immediately after they have been used, which is called myotonia.1 Patients experience myotonia symptoms differently, describing their experience as stiffness, cramps or “locking” of their muscles during everyday tasks and movements.3 In addition to patients experiencing their symptoms differently, patients often describe their symptoms as unpredictable as they may differ from time to time4,5 and they may range from subtle effects on muscles that have little impact on the ability to move to more severe symptoms that significantly affect daily activities.1,3
Struggling to open your hand after clenching your fist may be a sign that you have NDM.6
What’s your NDM story?
Share your story of your journey with NDM here
You are free to share your story in writing, video, audio, painting, or any other form that helps you tell your story about your journey with NDM.
Share your story
If you live with or care for a person with NDM, and you would like to help others understand what it means to live with this disease, we invite you to share your story with us. Stories will be published on this platform to further “unlock” the different ways people experience symptoms associated with NDM.
Together we can “unlock” NDM to create awareness, increase understanding and empower those living with NDM.
- Hahn C, Salajegheh MK. Iran J Neurol 2016; 15(1):46–53
- Trivedi JR, et al. Brain 2013;136:2189–2200
- Nowak U, et al. Presented at WMS20: Virtual Congress. 28 Sep–20 Oct 2020
- Heatwole CR, et al. Muscle Nerve 2013;47:632–48
- Trip J, et al. J Neurol 2009;256:939–47
- Heatwole CR, et al. ASENT 2007 Apr;4:238-251