Dear Kristin,

by | Jan 9, 2020 | 0 comments

Dear Kristin, 

We just got married. Before we spoke of having a big family, but, recently, my genetic testing showed I have CMT1a. I always thought I was just clumsy. My husband now says he doesn’t want children because of the disease. I am devastated. I always dreamed of a big family. 

Yours Truly,

CMT1A Patient


Dear CMT1A Patient, 

I am sorry you and your husband are experiencing this. His reaction is both painful and understandable. With time and education, he may change his mind. I have never personally ever regretted my decision to have a child, but it’s a very personal choice—a decision and a discussion that you and your husband should make after research and heart-to-heart conversations. Many chose to not have children out of fear of passing CMT to them. There are also options in today’s world. There is preimplantation, to ensure you don’t pass CMT onto your children. There is also adoption to consider. Neither are to be taken lightly, but you both should be on board with whatever decision you do make, otherwise you may wind up resenting him, and he you. Having CMT does not change who you are or what you had dreamed for in life. Let him see and understand the life you have lived is a life worth living, and maybe he’ll understand that any child you bring into this world will feel exactly the same. 

Congratulations on your new marriage! 

Kristin Gelzinis LMSW 

HNF Patient Advocate

Learn more on this topic

Related Blog Posts

Living with CMT: Key Topics

There are a number of adaptive aids that can help make everyday tasks easier. This section lists just a few of them. Some of these items can be adapted from materials at home, others must be purchased.

From the words of a CMT Hero

From the words of a CMT Hero


I often wonder what it’s like to be like everyone else out there. How great it would be to do things most consider easily accessible and within reach. I believe in myself; it’s not really about that. Sometimes I just feel alone, cold, and bitter after considering life in general. Then I ponder a thought: there are too many hurdles I’ve already jumped over

Join the conversation

Leave a Comment


Submit a Comment

Your email address will not be published. Required fields are marked *


Join for notifications on events, campaigns, & news