Omg! I so wish you are right, and i have mistaken myotonia congenita with muscular dystrophy! I would be very happy! Here in Latvia this disease is so rare, that all doctors are speechless. Last doctor i visited, told me that in all her practise (30 years), im second case of this disease. She also said that she was sure that only male can get this disease. :D I assume that there are more people who have myotonia, but since there are almost no information, they keep living their lifes wondering what causes charasteristic syptoms (as i did all my life till now).
You have encouraged me to take DNA test, to find out, which excately form do i have and also turn off posibility of my husband being a carrier.
I will definitely send you the results, to be sure of what to expect.
Thank you so much, Jan! :)

Type of Myotonia: not sure if i want to know

Country: Latvia

Hi. after carefully read ur message. i think you have mayotonia congentina.
because congentina is comes by birth.
as i am also the victim of this disease, i think, taking a child will be a very bad decission, i dont want to see my child also bear my disease in his all life, and after that he/she will blame me for his disease.
so we should control our self to stop this disease.

Type of Myotonia: Mayotonia Congentina

Country: Bangladesh

In many ******** there is a greater stigma attached to inherited conditions. Being "defective" embarrasses your family, hurts your chances for employment and marriage, and it causes the person affected to feel depressed and hopeless about their future (I get many emails from around the world so I'm saying this from experience). I agree that many conditions are so debilitating we should look at other options like adoption. But myotonia congenita is not one of those conditions...it is not life-threatening, it does not require hospitalizations and expensive treatment, and it does not affect our mental abilities. We can lead happy, productive lives even if we have some limitations physically.

My mom once said to me that if she'd known she had MC and would pass it on, she wouldn't have had me. It made me really sad that she felt guilty. I had a lot of struggles when I was younger, mainly because we didn't know what was wrong with me and everyone thought I was making it up. But I wouldn't choose not being born.

I asked my girls with MC if they wished they handn't been born because of it, and they looked at me like I was crazy :-)

Every person born into this world has challenges. For some it's illnesses, for others it will be their family and relationships or their financial situation. When you watch the Olympics the best stories are the ones about obstacles that had to be overcome to achieve greatness. Myotonia congenita is one of my obstacles, and it definitely makes the journey more interesting, but it is not going to keep me from enjoying my life and hopefully helping others enjoy it.

Jan

Type of Myotonia: Thomsen's

Country: USA