Dan,

You stated "My parents (and theirs) had no idea about myotonia congenita, until I was born with fairly aggressive symptoms"

If there is absolutely no family history of myotonia congenita (as was the case in my family) - except for my brother and sister - then it seems highly probable to me that you have Beckers and not Thomsens Disease.

With Beckers - both parents must have the same defective gene - which is exceedingly rare.

If this is the case and you have Beckers and not Thomsens, then it is exceedingly unlikely that you will pass on the disease to your child unless the person you marry is actually related to you (eg distant cousin)

Of the 8 children that my brother, sister and myself have - none have the disease. If we'd actually have had Thomsens (which was diagnosed about 50 years ago) then statistically 50% of the children should have had the disease.

We have a very large number of cousins - and whilst some of them may well be carrying the defective gene - none of them have the disease.

So before you make any decision on this, I suggest you check out your family history as thoroughly as possible. If nobody except your brothers and sisters have the disease, then I think it highly unlikely that your children will inherit it.

Dan,

You stated "My parents (and theirs) had no idea about myotonia congenita, until I was born with fairly aggressive symptoms"

If there is absolutely no family history of myotonia congenita (as was the case in my family) - except for my brother and sister - then it seems highly probable to me that you have Beckers and not Thomsens Disease.

With Beckers - both parents must have the same defective gene - which is exceedingly rare.

If this is the case and you have Beckers and not Thomsens, then it is exceedingly unlikely that you will pass on the disease to your child unless the person you marry is actually related to you (eg distant cousin)

Of the 8 children that my brother, sister and myself have - none have the disease. If we'd actually had Thomsens (which was diagnosed about 50 years ago) then statistically 50% of the children should have had the disease.

We have a very large number of cousins - and whilst some of them may well be carrying the defective gene - none of them have the disease.

So before you make any decision on this, I suggest you check out your family history as thoroughly as possible. If nobody (excluding any brothers and sisters) have the disease, then I think it highly unlikely that your children will inherit it.

If you know that you have Thomsens, and that there is a 50% chance of your children inheriting, then I still think that it is a morally correct decision to have children - if both you and your partner so decide.

In my view MC is not that serious a disability. In fact I look around me and it appears that 20% of the population are grossly overweight. I think that being extremely fat is far more debilitating than having MC.

And just on taking a view of all the kids of the people I personally know - and I see a pretty high number of disabilities or diseases that are far more serious.

What makes the human race great is diversity.

Dan,

I've had the symptoms of MC since I was about 10. My older sister has it too, as does my mum. No sign of it on my dad's side, so I reckon it's good old-fashioned Thomsens we've got. Ours is probably a bog-standard, and rarely debilitating, case. Other than feeling a total idiot at times (the odd bit of falling over when we stand up too quickly, and the ubiquitous John Wayne impressions when walking), we have all had brilliant lives, and quickly learned to laugh about our shared symptoms. A problem shared is no longer a problem as far as our MC is concerned.

I've got two kids of my own, now, and have never once worried about whether they will get MC... odds are that at least one of them will. Come the time, I'll be as open and supportive about it with them as my family was with me.

As for the moral issue side of things, OK you may pass on a "defective" gene, but if Steven Hawking's parents had known that he would develop ALS would it be morally right for them to not have him and so deny the world his research ?

When it comes to having kids or not, it's totally an "each to their own" decision. From my experience, MC is probably the least of your issues when considering whether to have children !

PK

As humans we are blessed and cursed with the certainty that we will die. We have the time to contemplate it yet to contemplate it too much would drive us mad. The fact is we all carry with us the seeds of our eventual destruction. I don't believe that the certainty of our death should prevent us from living. God has given us the blessings of this earth to enjoy and fully expects us, even with our failures and foiables, to enjoy the experiences this earth gives us. I believe I will not be judged in the hereafter by what I had or didn't have but rather by what I did with what I was given.

Nick Robinson

Hi Nick! Your post reminded me of an exchange I had many years ago when taking Sociology in college. I was newly diagnosed with MC and was lamenting the fact that two of my daughters had inherited it without my even knowing I had a genetic condition.

The topic in the class was basically getting rid of defective gene pools by counseling couples not to have children if there was some sort of inheritable disease. Even my mom was going through a bit of a guilt crisis at that time telling me she never would have gotten pregnant with me if she'd known I would suffer from her passing on the MC.

So I guess I began to realize that if my parents had known about the MC I would never have been born. It's kind of weird to sit and think about never having existed! So I offered this twist in class on Tennyson's well-known phrase, "Better to have loved and lost":

"Better to have lived and suffered than never to have lived at all."

I know there are certain diseases that convey a great deal of suffering, but really myotonia congenita isn't one of them. It's embarrassing, humiliating, frustrating, and sometimes painful, yet I would consider it mild compared to many inherited diseases.

It's a personal choice and I respect whatever choice parents make, but I certainly would not hesitate to have children after a diagnosis of MC, and remember if you have the recessive form, Becker's, chances of you passing it on are almost zero.

Jan

Yeah Have kids...
Im only 18 but not for a moment i think my condition would stop me from starting a family later in life.. even if they do have it you'll be a more understanding parent and be able to relate to their problems etc..

Hi Dan,
my name is Ian and ihave MC BECKERS and i have 3 children 2boys and a girl.My first child i was unaware of my condition but the other 2,me and my partner seek advice from my consultant, he advised us that are children only had a 50/50 chance of having a defective gene and would definitely not have this condition.All my children are healthy, although they carry my defective gene they may not do so to there children (fingers crossed) there for the defective gene could be wiped, my children grandchildren may never be infected.If this gene does reoccur then it will never be in mine, my children or grandchildren's lifetime and by this time mutate this gene.Hope this helps!
Ian

Type of Myotonia: TOFFEES-69@hotmail.co.uk,3