How do you manage breathing problems?

[Guest guest]

My name is Sloan. I'm 43 years old. I've had CMT since childhood. It does run in

the family. I'm having shortness of breath lately and they are leaning towards

it being related to CMT. In addition to CMT I have polycystic kidneys currently

on dialysis and waiting for a transplant. I also have another neurological

program called neurofibromytosis. If there is anyone else having breathing

problems I would love to hear how you are coping with it.

[Guest guest]

Sloan,

While I do not have breathing problems, may I direct you to use our

Archives - search 'breathing' and 'breathing issues'. Also look in our

Files for the folder on Breathing and CMT, click to open for articles.

Gretchen

[Guest guest]

Sloan, I also have breathing problems, including shortness of breath

and unable to breathe sufficiently while lying down. Several members of

my family who have had CMT also had the same breathing difficulty. My

pulmonologist says that CMT has affected my diaphragm, which is a

muscle, and causes it not to function properly while I'm lying down.

So, I use a bipap machine when I lie down or sleep. One of the articles

Gretchen refers you to discusses weak diaphragm problem.

Many in my family with CMT also have heart-related problems. We

usually contribute shortness of breath to our heart condition. I admit

that I don't watch my weight and diet, and I don't exercise enough.

Wishing you well,

Joe