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Living with Polyneuropathy CIDP, GBS, & CMT

Hello and a question

Hi All

I just came across this group yesterday and I was delighted to find it as I don't know anyone else with my condition.

I have CMT 4c and battle with balance and walking.

I have always felt ambivalent about having kids however recently I am more inclined to the idea. I want a kid.

I have read all the stats, genetics and know that I will require help however that is all medicine.

I want to know from anyone who has CMT and had kids how did it affect your condition, how did you manage and anything else you would like to share.

Any views on the topic will be greatly appreciated.

Sammy

Hi Sammy,

We are so glad you joined us! You have a valid question on having children when you have a genetic disorder like CMT.

The odds are 50/50 chance EACH child can have CMT or can be a carrier of it to their offspring. So, it is a heavy responsibility to carry in deciding to have children. And then, there are affects, for yourself, as childbirth is adequately labeled "Labor". So, it can affect progression during pregnancy, childbearing and postpartum.

Raising a child for any "normal" woman, is a 24/7 task and going for 18 + yrs. I have three children, ages 37, 23, and 21. Now, have 4 grandchildren, ages 18, 6 (twin boys), and 2. If I had known of my CMT when I was planning children, I probably would have decided not to have them, knowing the risks for them. But, I can tell you now, I'm so thankful I did not know then and it was not my decision to make.

Of my children, my two younger children, one has been diagnosed, the other tested twice and came out inconclusive. My older daughter must have been a carrier, b/c my oldest granddaughter, age 18, shows signs and she feels certain she has it. She was tested but her mother never followed up on getting results. (She doesn't want to know) Since, her mother divorced and estranged from the man, who was in the Air Force, and they are the ones who had her tested. So, not sure if she could get them now or not.

I was 40 years old before my diagnosis, and all along knew something was "different" about me; In my 30's, something was definitely causing me more pain, stress and trouble in function but, still doctors would excuse it or explain away my symptoms or label them something else.

I had already had my first child at the age of 21. Really no difficulty in childbirth, and actually felt healthier then than ever in my whole life. I chose to eat better, and exercise on a stationary bicycle my whole pregnancy b/c I was determined to have a healthy child. So, I had prepared my body (not knowing I had CMT) The other two children, did affect me but I was age 35 and then aged 37 when they were born.

Let me just state my original plan was to be a school teacher so I could have lots of children and enjoy them even though not my own. Did not plan to marry, so I could focus totally on children. So, children were what I was and still am about. Point being, I was devoted totally to children, and committed. It is a huge commitment, even for "normal" people. No one can tell you if you need or want the commitment. You must decide and way the pleasures vs. the difficulties.

I'm so happy (even with the difficulties) to have my children and now my grandchildren. They enrich our lives so very much daily! I'm glad I did not cheat myself out of this rewarding experience. But, everyone is different and has to make their own choices for their journey in life.

There is no reason why your CMT should stop you from having children, but do consider the risks and decide if you can commit to coping with your CMT and possibly the CMT of your children. Life is a risk,"a box of chocolates" and we "never know what we're gonna get", but we can make better choices for our given circumstances when we know some of the facts up front .

I hope I've given you food for thought and wish you well in the decision. I'm here as your friend and happy to chat in person via chat. Email me personally if you want to chat further.

CM

l always thought l did not have CMT even though it did run in my family. So little was known about it 28 years ago when l had my first son. l also gave birth to a daughter 5 years later. They were both premies. Not sure what CMT may of had to do with that.

l was not diagnosed until l was 47.

Every patient is different with their symptoms and how if affects their body.

Good luck to you! Tami

CMT 4C is autosomal recessive. That gives you better odds. Both parents would have to be carriers to have a child with CMT. The odds are 1 in 4. Out of 4 children: 1 would have CMT, 2 would be carriers; 1 normal. If your partner is not a CMT 4C carrier, you could only produce CMT 4C carriers, with 50-50 odds of that happening.

I have CMT 2A1. That is autosomal dominant and a child of mine would have a 50-50 chance of having CMT with any partner.

Follow the link below and scroll down to Genetic Subtypes for which types are dominant and which recessive.

https://en.wikipedia.org/wiki/Charcot%E2%80%93Marie%E2%80%93Tooth_disease#Classification

I have cmt1 and both my children where born with it to. I’ve known all my life I had this disease. And the first time I fell pregnant with my son who is now 9, knowing the facts and the 50/50 chance he could inherit this condition my mind was made up that I wanted my son. Perhaps people may find my decision selfish and to a point I’d agree. My pregnancy wasn’t planned but regardless of my condition and the risks. There was noway I couldn’t go through with the pregnancy.

The pregnancy in itself was difficult. Most of my symptoms intensified more towards the end. I was 19 so was a bit more mobile and active and coped with it better than with my daughter when I was 27. Both my children where overdue and with my daughter I was induced as I was falling over a lot and completely drained.

It’s the individual’s choice wither to have children or not with any hereditary illness. For me there is a slight sense of guilt in that I passed this disease on but what I will say is yes they have there difficulties but they can still have a happy life and adapt to their capabilities. My daughter is coming up for 3. She has had a horrendous time of it from she was born. And nothing holds her back and nothing will. Kids have an amazing resilience of “getting on with it” so to speak. So it isn’t easy but I personally have no regrets starting my family but It’s my responsibility as there mum to be their for them that wee bit more. As I also have the condition Iam glad that I can relate to how there feeling and totally understand what they are going through.

I wouldn’t discourage anyone from starting having a family who has cmt. But I would say get all the advice and facts you can and think long and hard before you make your decision. Because it is difficult. But it is worth it :))

Thank you all for sharing. Really appreciate it. I am still very much undecided so I guess in time the right decision will be made.

Sammy,

CMT 4c is a very rare variation of an already rare genetic disorder. If you have been conclusively diagnosed with the 4c variant, then that by definition means you have a single genetic mutation (gene SH3TC2). In terms of having children, it’s exceedingly unlikely that you will pass it on to your children. Your mate would have to also have to have that precise genetic mutation, and then you’d only have a 25 % chance of passing in on (that’s how autosomal recessive heredity works). But, don’t concentrate on the 25%, focus on the fact that the odds of two people with that gene mutation connecting to begin with are astronomically low. There are countless inherited conditions that you are more likely to pass along to your kids, all of which are in turn very rare. I have CMT4c and was advised that testing my wife for the same gene mutation was not cost-effective given the extremely low likelihood she would be either a carrier or have the condition. My son was born healthy and doesn’t present any symptoms of CMT4c. I hope that helps.

Kyle

I'm sorry did not clarify my type when posting my facts of genetic inheritance. My type is CMTX1. Daughters inherit from their fathers but mother's can pass to either gender. Glad you cleared it up b/c it is different with the varied types.

Seconded by me ! - now 74 years old CMT4C: None of my ancestors my parents knew or heard about, none of my siblings, none of their and none my children and grand-children are affected. Both of my parents were carriers (1 good + 1 bad gene), I had the 25% misfortune to get mom’s and dad’s bad copy. My children are carriers like my parents were. My grand-children may have inherited the good copy from the carrier parent, thus 50% chance they are “Back to NORMAL”. Otherwise they remain “CMT4c-carriers” like many others, unaware, unaffected and unconcerned.