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Will my kid get it? Prenatal genetic testing/counselling
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.
Replies to This Discussion
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Permalink Reply by Return_life on
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It's an autoimmune disease. Yes there is a genetic component.
Am a bit older than u and I live in montreal... BIG majority of alopecians do not give this to their child, a very big majority... I just spoke to an alopecian 2 days ago, the guy has 5 kids, all with hair. I have 2 kids also and they don't have alopecia. You cant test for this honestly and it doesn't make sense. We can't predict autoimmune disease...
Enjoy and have some kids, it's the best thing in life. Alopecia should not ruin your happiness for this.
PS: on top of it... we are in 2018 now, treatment exists. In a few years on the market alopecia is going to be an autoimmune disease like all the other one...
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Thank you xoxo that is comforting to read about other Aloipecians experiences especially when they had their own kids.. I just want to make an educated decision but I totally understand that I should have an open mind about it.. Thanks!
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Permalink Reply by hagster on
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So, if your child had a 50% chance if getting alopecia, you would opt to not get pregnant? How about only a 25% chance? What then?
Genetic testing is for serious diseases and ones known to be inherited that can cause serious disease. You put on a wig and go about your life. A child with Sickle Cell Anemia ir Downs doesn't have it quite that easy. I'm sorry, but alopecia is not life threatening.
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Of course I know that Alopecia is not life threatening but you suffer through it especially at the begging. No body can deny that.. it's not life threatening but it's life changing and requires certain adjustments to a new life style.. it's only natural for me as a future mom to not want to put my kid through it IF there is any way to predict it. And that's why Im asking and I've been researching.
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Hagster, Sorry, but just because alopecia areata is not "life-threatening" does not mean its effects on the quality of life should be minimized. I would hardly say that a child with sickle cell anemia has it harder than a child with alopecia areata. People with alopecia areata have a REAL disease! Yes, at age 69, I have put on a wig "and gone on with my life." But that does not make my alopecia areata any easier. I cannot image what this disease does to someone younger as it is hard enough when you are older.
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I had AA since I was 10 years old. I have AT since I was 40 3 years ago. I have 2 healthy kids 3 years old and 5 years old and they both have zero hair loss to date. Fingers crossed .
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Thanks bibby! That puts my mind at ease... hope they will never ever have to deal with it. xoxo
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Hi - I asked about genetic counseling and the doctors explained to me that they dont even know which genes cause alopecia (they do but its not specific to an individual) so they wouldnt even have a way of removing the defective genes. the only thing i can think of is if your husband has a family history of autoimmune - maybe just do an IUI so the sperm is cleaner and stronger.
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Thanks for sharing. Yes that's what I came to realize too. even if they do the genetic test, they can't identify the defective gene. Luckily my husband doesn't have any history of autoimmune in their family but not sure how IUI helps with the genes?
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it doesnt. they just clean the sperm more so my theory is it will be stronger (just my own theory).
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