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Testing for Type 1 or 2

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I have been a member of the group for years. It is very informative. Im not sure

I have ever posted. My daughter has BPES and is now 13. Ive been very

interested in the discussions recently regarding POF, cryopreservation and

infertility.

Our geneticist here in CA has not tested our daughter for Type 1 or 2, stressing

that the testing is less than accurate.

Is there anyone who can respond to the accuracy of the testing, and does anyone

live in CA who has had their child tested?

Thanks,

Amy Barr

Sacramento, CA

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Hi Amy

My daughter is 8 yrs old. She had the blood test to confirm BPES when she was

about 4 years old. The test was done at the lab in Belgium which is the centre

used in Europe for testing.

The info I was given is that the test can confirm BPES but not the type of BPES.

My daughter's test showed a complete deletion at FOXL2 and so I am assuming that

she will have Type 1 BPES. But this is my assumption and not that of the

geneticist.

The reason the testing was done for my daughter is that she has problems with

her palate and her maxillo-facial surgeon wanted to find out if she had any

other genetic abnormality. The only genetic abnormality that was found was that

she had a deletion at FOXL2 on chromosome 3, confirming BPES. The lab couldn't

confirm what Type of BPES she had.

Hope this is helpful. I am not a geneticist and can only relate what I have been

told and read. Your best source of info is a geneticist.

Regards

Colchester (UK)

>

> I have been a member of the group for years. It is very informative. Im not

sure I have ever posted. My daughter has BPES and is now 13. Ive been very

interested in the discussions recently regarding POF, cryopreservation and

infertility.

>

> Our geneticist here in CA has not tested our daughter for Type 1 or 2,

stressing that the testing is less than accurate.

>

> Is there anyone who can respond to the accuracy of the testing, and does

anyone live in CA who has had their child tested?

>

> Thanks,

>

> Amy Barr

> Sacramento, CA

>

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