I recently posted a message under research and told anyone who was interested to contact me privately and I would share the info.  I did get a couple of e-mails, and happily responded to them.  I was not sure if anyone on this board would be interested, but reading the postings that pertained to this information, I will be happy to share it will all of you.  Cornell has decided to research my entire family of siblings, and perhaps their children as well because of our gene expression.  Here are some of the symptoms.

Sister 1:  Hirsutism, severe acne, crushing depression brought about by stressors in life.  Blood sugar and blood pressure problems.

Sister 2:  darkening skin, hemorragic ovarian cysts, hirsutism, crushing depression, enlarged "scrotal type" labia minora with hair.

Sister 3:  Enlarged clitoris (complete with lifelong bladder problems), enlarged scrotal type labia minora, crushing depression.

Me:  Fused vaginal opening at birth, first thought to be associated with DES exposure in utero, but according to a DES expert in NY, there is no evidence supporting this theory, bouts with depression, I have had multiple gyn surgeries (8) and the adhesions I get due to these surgeries have caused many problems for me.  Every month during ovulation time I am bedridden for three days doubled over in pain due to the adhesions inside.  I go in almost every year, I call it my oil change, to have the adhesions removed.

Daughter 1: Fused vaginal opening.  With the use of Premarin creme she opened fine, but has since fused shut again.

Daughter 2: SWCAH, severely virilized, a rarity within this condition.

Nephew:  Urethral fusing, has had to have urethra opened 4 times in his life due to painful urination.  Doctors cannot explain why.  Acne.

Neice:  Body odor from age six, menstruation started at 10, acne problems, very short in stature, although was always the "biggest" kid in the class growing up.

I hope that I have not offended anyone by this posting with such graphic and open descriptions of our symptoms, but I have talked to all family, and all are quite open and willing to the sharing of this information.  My family feels that this information should be shared in the hopes that it may lead to a more clear understanding of this condition.  The reason why the Doctors are so interested in us is because we do not all share the same fathers, so the only connection we share is through our mother.  Chances that all fathers were carriers is what, one in ___?  Doctors feel something (in their words) is "awry" in our DNA, have pulled my sample as well out of deep freeze to check for a second mutation and are going to check daughter 1's blood as well.  They feel that all of these symptoms cannot be a coincidence.  So, I hope that this information shared will be helpful to at least one person in looking at their family history.