Life with children living with myotubular or centronuclear myopathy
Whether you’re just starting out on this journey of life with CNM/MTM or you’re an ‘old-pro’ who’s been around the block a time or two, life with CNM/MTM can be tricky. There are many twists and turns, and every child has unique needs specific to their personal care. This disorder affects children in a variety of ways and a truly spans the extremes of needs, but over the course of time, most children will experience similar needs.
We’ve compiled a list of resources for you to help with the care of your child. Within this section you’ll find resources for breathing issues, feeding issues, scoliosis, exercise and overall management of CMD.
Orphan diseases, like CNM/MTM can be extremely difficult to navigate in the medical community, so we’ve included articles to share with your clinician as a way to assist you when you’re consulting with medical help. If you’re new to this journey, trust us, you’ll be spending a lot of time with medical professionals! If you or your doctor are looking to speak with MD’s within this field that are more versed with this disorder we’ve listed them here.
As a way to let you know that you’re not alone, and that there are other families out there who share the same struggles in their daily life that you do, we’ve compiled family stories from across our community.
Life with CNM/MTM is hard, but there is hope!
There is always hope.
Alison Rockett Frase