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Hi beautiful people
I've had Alopecia Totalis for about 13 years now- As for myself, I have made my peace with it, I have a great life and great career, and most people around me even some close friends don't know that I have Alopecia. Although I wear a wig,over the years I've learned how to do my make up, and apply fake lashes that nobody will know unless I tell them. And with great quality wigs these days especially over the past 5 years, nobody has ever realized that this is not my own hair. All in all, I mean I have a very routine life BUT it's a different story when I think about my future kid(s) getting it and I start panicking.
I am 31 now and my husband and I are seriously thinking about getting pregnant. I live in Canada and the first thing I asked my family doctor was to refer me to a genetic counselling or clinic because I'm not even sure that my Alopecia type is genetic. I was the first and only one in my whole family who have had it and it started for me when was 16 in small patches and by the time I was 18 I lost all my hair.
Unfortunately, the genetic center at the CHEO hospital in Ottawa, rejected my referral and they said they wouldn't offer any test or counselling because they don't see my case as a genetic issue. However, I've done tones of research myself and talked to different drs and many believe this actually might be a genetic issue and there is a chance that my kid would get it. I have even tried finding private genetic centers in Ottawa, Toronto and Montreal, that offer some kind of prenatal test that studies defected genes(this test does exist) but it seems there are zero places that do that at least here in Canada!
This whole researching and not finding an answer and the fact that I haven't even been able to talk to a legit genetic about my concerns, has made me very anxious. Now my question for you is, have any one of you had a similar experience? have you been able to get genetic counselling somewhere in Canada? Can you please share your stories about getting pregnant with Alopecia, your kids getting or not getting it, and if you had done some sort of genetic testing/counselling? Thank you so very much!
I would also like to thank whoever that's going to ease my concern by saying there are far worse diseases that a kid can get than Alopecia and I shouldn't stress over tit this much! I fully understand and respect your opinion, but if there is a chance that I can somehow predict what will happen to my kid's genes and then I will make an educated decision, I would wanna take it.
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I'm also wondering about this. I have androgenetic alopecia and I'm very worried my daughter (3 months) will also have it, and it's causing me a lot of stress because I don't want her to go to through what I've had to. My dad made a comment about "she has about the same amount of hair as you did at that age" and it worried me ever since. :(
It's my understanding that alopecia areata is not completely genetic (i.e., you don't have to have a special gene to develop it). But there does seem to be a genetic propensity in that 25% of people with this disorder have at least one other person in their family with it. However, it is my understanding also that 75% of people alopecia areata do not have other family members with this condition.
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