Re: Hello - I have Type I BPES

[Guest guest]

Dionne,

If you would not mind sharing….

My daughter is almost 4years old. She has

BPES, but has not been genetically tested. We are not sure when we need to do

this. The only reason we want to know is…the same reason as you. If we know

she is type 1, then we want to harvest her eggs at an early age so that she

will have them available if she develops POF. When did you find out that you

had type 1 and was it expensive?

Nicki

Venable

Section

Chief

Community Development

County Community Corrections

201 West Superior

Street

Fort Wayne, Indiana 46802

(260)

449-7252

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From: blepharophimosis

[mailto:blepharophimosis ] On

Behalf Of Dionne

Sent: Sunday, February 14, 2010

5:57 PM

blepharophimosis

Subject: blepharophimosis Hello

- I have Type I BPES

Hi there,

I am looking for any and all information available, including doctors in the U.S.

that might be able to help me out.

I am a female with Type I BPES....and I am looking for any advice on how to get

pregnant. My fiance and I simply do not (and I doubt will ever) have the means

to seek alternatives such as egg donors and adoption. Has anyone out there been

successful in getting pregnant that has BPES??

Any information would be MUCH appreciated. Thank you sooo much!!

Dionne

[Guest guest]

Nicki,

I actually found out accidentally. My fiance and I were trying to get pregnant (yes I know that is out of order than how it should be....but I didn't care) anyways for years I had gone to the OB/GYN and they kept giving me excuse after excuse as to what was wrong with me....finally one doctor cared enough to check into things and diagnosed me with POF she then pushed me to dig into my family history and about my eyes and found that they had years ago diagnosed me with BPES. So we put the two of them together and are assuming its Type I but I've never had the money to get a proper diagnosis.

I know there are plenty of places that you could go to get genetically tested. I honestly do not know if it is costly, I just figured I had enough proof to not go any further.

That is wonderful that you are taking the precautions to help your daughter out for the future...I wish sometimes that my parents had done more research when I was child....in all honesty being 30 and having your biological clock ticking for the past 8 years and there is nothing you can do about it heart wrenching.

Take care,

Dionne Dionne M. Coppola

From: Nicki Venable <nicki.venable@...>"blepharophimosis " <blepharophimosis >Sent: Mon, February 15, 2010 8:48:52 AMSubject: RE: blepharophimosis Hello - I have Type I BPES

Dionne,

If you would not mind sharing….

My daughter is almost 4years old. She has BPES, but has not been genetically tested. We are not sure when we need to do this. The only reason we want to know is…the same reason as you. If we know she is type 1, then we want to harvest her eggs at an early age so that she will have them available if she develops POF. When did you find out that you had type 1 and was it expensive?

Nicki Venable Section ChiefCommunity Development

County Community Corrections201 West Superior StreetFort Wayne, Indiana 46802(260) 449-7252This message contains confidential information. This email and any attachment may contain protected health information as defined by HIPPA (45 CFR 164.502), state and federal confidentiality rules (42 CFR Part 2) and IC

16-39. The information in this email is intended only for the use of the named addressee, individual(s) or entity named above. The federal rules prohibit you from making any further disclosure of this information unless otherwise permitted by law. If you are not the intended recipient, you are hereby notified that any disclosure, copying, distribution or the taking of any action in reliance on the contents of this electronic information is strictly prohibited. Please notify the sender immediately if you have received this by mistake, and delete this e-mail from your system. E-mail transmission cannot be guaranteed to be secure or error-free as information could be intercepted, corrupted, lost, destroyed, arrive late or incomplete, or contain viruses. The sender therefore does not accept liability for any errors or omissions in the contents of this message which arise as a result of e-mail

transmission.

From: blepharophimosis [mailto:blepharophi mosis@group s.com] On Behalf Of DionneSent: Sunday, February 14, 2010 5:57 PMblepharophimosisSubject: blepharophimosis Hello - I have Type I BPES

Hi there,I am looking for any and all information available, including doctors in the U.S. that might be able to help me out. I am a female with Type I BPES....and I am looking for any advice on how to get pregnant. My fiance and I simply do not (and I doubt will ever) have the means to seek alternatives such as egg donors and adoption. Has anyone out there been successful in getting pregnant that has BPES?? Any information would be MUCH appreciated. Thank you sooo much!!Dionne