Re: Infertility in Type 1 BPES

[Guest guest]

Hi

I am 34 and I don't know for sure if I have type 1, but I do have some

signs of POF, if you want to you can email me out of this group just

because I have a long history of " symptoms " but I did have a baby. None

of my doctors ever heard of this causing POF, I only learned about

through this group.

Beth

>

> Hi

> My name is Kathy and I have a 19 year old daughter with BPES Type 1.

> When she was born the doctors didn't tell me that this version of the

> syndrome could cause infertility. We just found out this past

weekend

> when her cousin couldn't conceive that it was caused by BPES. I have

> an appointment with a fertility specialist next week to discuss her

> options. She hasn't had any problems yet but we're not sure if she

is

> already in premature ovarian failure. I would love to hear from

> anyone that has an older daughter with the syndrome what they did.

>

[Guest guest]

Welcome Kathy,

My name is Maree & I live in NZ (near Australia!)

I know your concerns about your daughters fertility `worries`. My

daughter is also 19 & has BPES. Really there is not a lot that can be

done if they do go through POF although I have heard of the

possibility of having eggs frozen while there is fertility, to be

available later if the person wishes to conceive. For ourselves, I

also have BPES & had only one child at age 29yrs. I then had

fertility problems, trying to have more children. The drs &

specialists were not aware of the link with BPES. I am now 48yrs. Now

that I know about the link, I feel sure that I must be Type 1. We

have both had blood tests done to determine what type we are but are

still awaiting results - that was 10 months ago so hoping it will be

soon.

Does your daughters cousin have BPES? & do you also? Like to hear

about your visit to the fertility specialist if you don`t mind

sharing. Can email me direct if you want.

Talk again soon

Maree

--- In blepharophimosis , " z942271 " <z942271@y...>

wrote:

>

> Hi

> My name is Kathy and I have a 19 year old daughter with BPES Type

1.

> When she was born the doctors didn't tell me that this version of

the

> syndrome could cause infertility. We just found out this past

weekend

> when her cousin couldn't conceive that it was caused by BPES. I

have

> an appointment with a fertility specialist next week to discuss her

> options. She hasn't had any problems yet but we're not sure if she

is

> already in premature ovarian failure. I would love to hear from

> anyone that has an older daughter with the syndrome what they did.

>

[Guest guest]

Actually has not been tested but exhibits all the outward

symptoms of the syndrome. The syndrome was passed from her father.

On her father's side of the family all her aunts and uncles have

BPES. has two great aunts, two aunts and three female cousins

with fertility problems. I didn't know the cause of the infertility

had anything to do with BPES. I had hoped that since I wasn't

seeing any signs of female trouble in my girls (I also have a

younger daughter without BPES) that they would not inherit the

infertility. This past weekend her two of her cousins were told

they could not conceive because of BPES. I started reserching the

syndrome and discovered that was at risk for POF. I

remembered all the problems her aunts went through and that one

issue was the eggs do not mature enough for fertilization. I

contacted a Fertility Endorcinologist and that is who we are seeing

on the 20th. If she is not in POF, we are going to consider

harvesting and freezing her eggs. I was desparate to know if there

were women who did conceive at least once and I thank you for

letting me know that you had a child.

> >

> > Hi

> > My name is Kathy and I have a 19 year old daughter with BPES

Type

> 1.

> > When she was born the doctors didn't tell me that this version

of

> the

> > syndrome could cause infertility. We just found out this past

> weekend

> > when her cousin couldn't conceive that it was caused by BPES. I

> have

> > an appointment with a fertility specialist next week to discuss

her

> > options. She hasn't had any problems yet but we're not sure if

she

> is

> > already in premature ovarian failure. I would love to hear from

> > anyone that has an older daughter with the syndrome what they

did.

> >

>

[Guest guest]

Maree,

I live in the state of Missouri in the US. I am divorced from

's father so I have limited access to the family history. I do

know that for 4 generations the women with BPES have been unable to

conceive even one child. One cousin recently had three children

with one pregnancy by having some sort of uterine lining transplant

and then Invetro Fertilization. As you can imagine my home has been

very sad this week. How do you explain to your 19 year old daughter

that children may not be an option for her? She has been dating the

same boy for 3 years and they both love children. She asked him if

he would still marry her if she couldn't have children and he said

yes but this breaks my heart. I keep reminding her that there are

so many more options today than there were 25 years ago. We are

going to see an Endrocinology Fertility specialist tomorrow. I

emailed the researcher that is running the study of BPES and

infertility in London. I understand that living in the US

won't have the resources to join the study but thought if I shared

what information I knew about the family maybe he would share any

information he could with me. If I hear from him I will let you

know what he says.

-- In blepharophimosis , " chinagal46 " <gourley@i...>

wrote:

>

> Welcome Kathy,

> My name is Maree & I live in NZ (near Australia!)

> I know your concerns about your daughters fertility `worries`. My

> daughter is also 19 & has BPES. Really there is not a lot that can

be

> done if they do go through POF although I have heard of the

> possibility of having eggs frozen while there is fertility, to be

> available later if the person wishes to conceive. For ourselves, I

> also have BPES & had only one child at age 29yrs. I then had

> fertility problems, trying to have more children. The drs &

> specialists were not aware of the link with BPES. I am now 48yrs.

Now

> that I know about the link, I feel sure that I must be Type 1. We

> have both had blood tests done to determine what type we are but

are

> still awaiting results - that was 10 months ago so hoping it will

be

> soon.

> Does your daughters cousin have BPES? & do you also? Like to hear

> about your visit to the fertility specialist if you don`t mind

> sharing. Can email me direct if you want.

>

> Talk again soon

> Maree

>

>

> >

> > Hi

> > My name is Kathy and I have a 19 year old daughter with BPES

Type

> 1.

> > When she was born the doctors didn't tell me that this version

of

> the

> > syndrome could cause infertility. We just found out this past

> weekend

> > when her cousin couldn't conceive that it was caused by BPES. I

> have

> > an appointment with a fertility specialist next week to discuss

her

> > options. She hasn't had any problems yet but we're not sure if

she

> is

> > already in premature ovarian failure. I would love to hear from

> > anyone that has an older daughter with the syndrome what they

did.

> >

>