I do wonder if your EM isn't primary but caused by something else if the original health problem causing the EM was cured whether the EM would go away and maybe this was the case with your sister. Carine was your sister's primary EM or secondary? I
f it was secondary what was the cause and did she have treatment for that?
For my sister, it was secondary, she had this condition for 1,5 year, and it disappeared gradually without treatment. She has just taken gincko and flavonoids. One year after the end of EM, she had a lupus. But when EM is secondary to lupus, it don't disappear without corticoids. So ... My doctor think that it is secondary for me to veinous insuffisiancy, and so for my sister, because he says that in this case, it could be familial, but not primary form.
I have hope that one day it will also disappear for me.
From what I've read if you have the primary form of EM and it's based on the NAV 1.7 gene defect, that gene is passed down through females and not males. The males and females in your family could have EM, but only the females can pass it down. Of course you'd need to verify you have the Nav 1.7 gene defect. Those who have the defect only have a 20 percent chance of getting the disease, from what I read, but this was from an article from some time ago. So you might pass it on to five kids and only one of them would get EM. Yet in theory any of the females you would have could pass it on as well. Perhaps and hopefully soon EM will be solved in the future, so I don't know if this information will be of a benefit or not to you. Those who have the genetic form of the disease seem to show promise in benefit from oral lidocaine, but this may not even help all of those with the inherited form. It may be difficult to say if your EM will flare back up or recede and go away completely. Much isn't known about the disease or syndrome. You may be more predisposed to get it or have it flare up more in the future as you experienced it at one time. My mom picked it up apparently from a reaction to a drug. She had a different drug give her a mild form of the EM about 8 years before another drug gave her the much worse case of EM, so I'd say be careful about the drugs you take, even from doctors. Keep researching and reading about it, and learn what you can. It can't hurt to have the knowledge, but also don't forget to live life and not focus to much on the negatives. As for genetic counseling, I can't say what I would suggest for you, I'm just telling you stuff I read on the net and that we have experienced. Try to stay hopeful and have a positive outlook as you learn more and figure out how that knowledge can positive affect your choices.
I don't know if I can say that I really know or met anyone who has had a disability or problem in life that has said, I wish I was never born. Even with some major problems in their lives they were glad to have had the good parts of their life. So I don't know if I would say that a risk to your possibly descendents would leave them with anything that would cause them to blame you for giving them a chance at living, even with a health problem. But that's just my opinion.