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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 

[email protected]