News from Caroline and Scandinavia

[Guest guest]

Hello All,

Great to see the help and support offered!

Well, here is the Caroline (now 14 months) update. After alot of

turmoil in finding a qualified doctor, we have now found an expert in

BPES.

Unfortunately, we live in Denmark, Scandinavia, - BUT try emailing

some of the doctors you can find on the Internet (or recommended at

this site) - I did that and the ones I contacted were only happy to

help.

Caroline will have the Z-operation (correcting the epicanthus) when

turning 2, and the ptosis correction min. 6 months after. The timing

recommended relies on the following; Caroline has good eyesight and

no problems, waiting will mean that he can use a sene from her own

thigh when correcting the ptosis (in general offering better

results), and she will not need to undergo surgery when still so

small. So this may be worth bearing in mind. (If the eyesight

suffers, he will operate right away).

Our doctor told us about a research group in Switzerland - I will

share the results with you when I have them.

I also talked to him about the stuff I had read about BPES. He calmed

me down. It is VERY RARE that BPES implies more than the COSMETIC

feature of the eyes!!

All in all, Caroline is doing great. She is a happy baby and already

has a large vocabulary. At the daycare center they recently assessed

her to be 5 months ahead of her age (verbally). She has had problems

crawling, but bumps on her behind to get around, and now cruises the

furniture etc. not quite able to walk yet. This is quite normal

because the balance is set off a bit by tilting the head, but we are

seeing a fysiotherapist helping her develop alternatives...and voila!

All in all, I have a good feeling about this, and I am confident that

surgery will help a lot.

I hope this will help some of you who recently have had your children

diagnosed - feel free to email me if you need detailed information

about the surgeries etc.

nne

[Guest guest]

Hi I found your post on the group. I was born with blepharophimosis

and now i am married and live in southern sweden. would like to

chat with people about it. i cant seem to find enough info about

the disorder. two years ago i was told that i had premature ovarian

failure that is realated to the syndrom. I do hope to hear from you

soon

Ami

> Hello All,

> Great to see the help and support offered!

>

> Well, here is the Caroline (now 14 months) update. After alot of

> turmoil in finding a qualified doctor, we have now found an expert

in

> BPES.

> Unfortunately, we live in Denmark, Scandinavia, - BUT try emailing

> some of the doctors you can find on the Internet (or recommended

at

> this site) - I did that and the ones I contacted were only happy

to

> help.

>

> Caroline will have the Z-operation (correcting the epicanthus)

when

> turning 2, and the ptosis correction min. 6 months after. The

timing

> recommended relies on the following; Caroline has good eyesight

and

> no problems, waiting will mean that he can use a sene from her own

> thigh when correcting the ptosis (in general offering better

> results), and she will not need to undergo surgery when still so

> small. So this may be worth bearing in mind. (If the eyesight

> suffers, he will operate right away).

>

> Our doctor told us about a research group in Switzerland - I will

> share the results with you when I have them.

> I also talked to him about the stuff I had read about BPES. He

calmed

> me down. It is VERY RARE that BPES implies more than the COSMETIC

> feature of the eyes!!

> All in all, Caroline is doing great. She is a happy baby and

already

> has a large vocabulary. At the daycare center they recently

assessed

> her to be 5 months ahead of her age (verbally). She has had

problems

> crawling, but bumps on her behind to get around, and now cruises

the

> furniture etc. not quite able to walk yet. This is quite normal

> because the balance is set off a bit by tilting the head, but we

are

> seeing a fysiotherapist helping her develop alternatives...and

voila!

>

> All in all, I have a good feeling about this, and I am confident

that

> surgery will help a lot.

> I hope this will help some of you who recently have had your

children

> diagnosed - feel free to email me if you need detailed information

> about the surgeries etc.

>

> nne

[Guest guest]

Hi Ami

Welcome to the group.

Here are some good sources of information:

http://freespace.virgin.net/andy.bowles/page6.html

You should definitely take a look at the first one, as it is pretty comprehensive.

I recommend that you ask your doctor to refer you to a geneticist so that they can answer any questions you may have.

Take care, Shireen

London

England

-----Original Message-----From: PB2X_Banshee [mailto:pb2x_banshee@...]Sent: 19 October 2004 13:33blepharophimosis Subject: blepharophimosis Re: News from Caroline and ScandinaviaHi I found your post on the group. I was born with blepharophimosis and now i am married and live in southern sweden. would like to chat with people about it. i cant seem to find enough info about the disorder. two years ago i was told that i had premature ovarian failure that is realated to the syndrom. I do hope to hear from you soonAmi

[Guest guest]

Hi Ami!

I'm also new to this group. I'm 27 years old. My name is Stina and I live in Sweden and I'm married and have a little girl of 3 months, Alice.

I was born with blepharophimosis. My father has it as well as my brother and sister. And, I'm sorry to say, my little girl has it too...

I have taken her to see a doctor and she will probably have some surgery when she is arond 3 years old. I had surgery when I was 6 and again when I was 17.

I would love to have contact with you, if you want to!

If you are interested you can send me a mail at stina_ls@...

Best wishes StinaAndy Bowles & Shireen Mohandes <andy.bowles@...> wrote:

Hi Ami

Welcome to the group.

Here are some good sources of information:

http://freespace.virgin.net/andy.bowles/page6.html

You should definitely take a look at the first one, as it is pretty comprehensive.

I recommend that you ask your doctor to refer you to a geneticist so that they can answer any questions you may have.

Take care, Shireen

London

England

-----Original Message-----From: PB2X_Banshee [mailto:pb2x_banshee@...]Sent: 19 October 2004 13:33blepharophimosis Subject: blepharophimosis Re: News from Caroline and ScandinaviaHi I found your post on the group. I was born with blepharophimosis and now i am married and live in southern sweden. would like to chat with people about it. i cant seem to find enough info about the disorder. two years ago i was told that i had premature ovarian failure that is realated to the syndrom. I do hope to hear from you soonAmi

[Guest guest]

Hello

My daughter was born in July and has blepharophimosis. I only recently learned that we have bleph, I only knew that I had ptosis surgeries. My baby has had two surgeries so far but her right eye still does not open as far as the left eye. I am taking her to some other doctors.

To Ami, I didn't know much about this either, even though my dad and grandfather both had it. I don 't think much really is known by many people because it is so rare. It can be a lot to take in. I hope this group can provide some support. I am sorry about your news from the endocrinologists.

There have been times when I felt extremely sad and frightened lately, not for me but for my daughter. And I guess I felt sad other times when I was younger, like when I got married and I knew my eyes would probably be closed in most of the pictures or when I worried about being the center of attention. I don't know how much people notice that I have bleph, most adults don't say anything about it. I just don't let myself notice other people that much, I guess I learned that early and I don't know if it is good or bad but it's just how I became. I have to explain sometimes to people about the baby, because she has stitches, etc., Sometimes it's hard and sometimes it isn't. I am so surprised when I see other babies her age and their eyes are so big and opened so wide, I just don't know any different because she is my only child. I just hope that she will feel good about herself and that she won't endure much teasing. I was teased as a child but my mother really got me through

it, she is wonderful and both my parents made me feel so loved and special, they still do.

I am not sure what my point was, but I hope you are doing well.

BethStina Lasu <stina_ls@...> wrote:

Hi Ami!

I'm also new to this group. I'm 27 years old. My name is Stina and I live in Sweden and I'm married and have a little girl of 3 months, Alice.

I was born with blepharophimosis. My father has it as well as my brother and sister. And, I'm sorry to say, my little girl has it too...

I have taken her to see a doctor and she will probably have some surgery when she is arond 3 years old. I had surgery when I was 6 and again when I was 17.

I would love to have contact with you, if you want to!

If you are interested you can send me a mail at stina_ls@...

Best wishes StinaAndy Bowles & Shireen Mohandes <andy.bowles@...> wrote:

Hi Ami

Welcome to the group.

Here are some good sources of information:

http://freespace.virgin.net/andy.bowles/page6.html

You should definitely take a look at the first one, as it is pretty comprehensive.

I recommend that you ask your doctor to refer you to a geneticist so that they can answer any questions you may have.

Take care, Shireen

London

England

-----Original Message-----From: PB2X_Banshee [mailto:pb2x_banshee@...]Sent: 19 October 2004 13:33blepharophimosis Subject: blepharophimosis Re: News from Caroline and ScandinaviaHi I found your post on the group. I was born with blepharophimosis and now i am married and live in southern sweden. would like to chat with people about it. i cant seem to find enough info about the disorder. two years ago i was told that i had premature ovarian failure that is realated to the syndrom. I do hope to hear from you soonAmi

[Guest guest]

Its nice to find out someone else here in sweden knows what i am going through. Where in Sweden do you live? I live in Växjö and attend SFI classes right now. I hope to find out more about the syndrom. My mother was a teen mother and didnt learn or listen much when the doctors were telling her about the syndrom. I have emailed several doctors and just searching the net for more info.

I hope to talk to you soon

Ami

From: Stina Lasu <stina_ls@...> Reply-blepharophimosis blepharophimosis Subject: RE: blepharophimosis Re: News from Caroline and Scandinavia Date: Wed, 20 Oct 2004 14:25:57 +0200 (CEST) Hi Ami! I'm also new to this group. I'm 27 years old. My name is Stina and I live in Sweden and I'm married and have a little girl of 3 months, Alice. I was born with blepharophimosis. My father has it as well as my brother and sister. And, I'm sorry to say, my little girl has it too... I have taken her to see a doctor and she will probably have some surgery when she is arond 3 years old. I had surgery when I was 6 and again when I was 17. I would love to have contact with you, if you want to! If you are interested you can send me a mail at stina_ls@... Best wishes Stina Andy Bowles & Shireen Mohandes <andy.bowles@...> wrote: Hi Ami Welcome to the group. Here are some good sources of information: http://freespace.virgin.net/andy.bowles/page6.html You should definitely take a look at the first one, as it is pretty comprehensive. I recommend that you ask your doctor to refer you to a geneticist so that they can answer any questions you may have. Take care, Shireen London England blepharophimosis Re: News from Caroline and Scandinavia Hi I found your post on the group. I was born with blepharophimosis and now i am married and live in southern sweden. would like to chat with people about it. i cant seem to find enough info about the disorder. two years ago i was told that i had premature ovarian failure that is realated to the syndrom. I do hope to hear from you soon Ami

[Guest guest]

Hi Stina,

Don't say your sorry to say that your wee girl has bleph! that kinda hurts:( they are beautiful whatever way they are:)

-- RE: blepharophimosis Re: News from Caroline and Scandinavia

Hi Ami!

I'm also new to this group. I'm 27 years old. My name is Stina and I live in Sweden and I'm married and have a little girl of 3 months, Alice.

I was born with blepharophimosis. My father has it as well as my brother and sister. And, I'm sorry to say, my little girl has it too...

I have taken her to see a doctor and she will probably have some surgery when she is arond 3 years old. I had surgery when I was 6 and again when I was 17.

I would love to have contact with you, if you want to!

If you are interested you can send me a mail at stina_ls@...

Best wishes StinaAndy Bowles & Shireen Mohandes <andy.bowles@...> wrote:

Hi Ami

Welcome to the group.

Here are some good sources of information:

http://freespace.virgin.net/andy.bowles/page6.html

You should definitely take a look at the first one, as it is pretty comprehensive.

I recommend that you ask your doctor to refer you to a geneticist so that they can answer any questions you may have.

Take care, Shireen

London

England

-----Original Message-----From: PB2X_Banshee [mailto:pb2x_banshee@...]Sent: 19 October 2004 13:33blepharophimosis Subject: blepharophimosis Re: News from Caroline and ScandinaviaHi I found your post on the group. I was born with blepharophimosis and now i am married and live in southern sweden. would like to chat with people about it. i cant seem to find enough info about the disorder. two years ago i was told that i had premature ovarian failure that is realated to the syndrom. I do hope to hear from you soonAmi

[Guest guest]

Hi Leelee,

I didn't mean to hurt anybody's feelings. I also have bleph so I'm most of all sorry to have passed it on to my daughter. She the most beautiful baby in the whole wide world and I love her to bits! All children are beautiful!!leelee <tltne@...> wrote:

Hi Stina,

Don't say your sorry to say that your wee girl has bleph! that kinda hurts:( they are beautiful whatever way they are:)

-- RE: blepharophimosis Re: News from Caroline and Scandinavia

Hi Ami!

I'm also new to this group. I'm 27 years old. My name is Stina and I live in Sweden and I'm married and have a little girl of 3 months, Alice.

I was born with blepharophimosis. My father has it as well as my brother and sister. And, I'm sorry to say, my little girl has it too...

I have taken her to see a doctor and she will probably have some surgery when she is arond 3 years old. I had surgery when I was 6 and again when I was 17.

I would love to have contact with you, if you want to!

If you are interested you can send me a mail at stina_ls@...

Best wishes StinaAndy Bowles & Shireen Mohandes <andy.bowles@...> wrote:

Hi Ami

Welcome to the group.

Here are some good sources of information:

http://freespace.virgin.net/andy.bowles/page6.html

You should definitely take a look at the first one, as it is pretty comprehensive.

I recommend that you ask your doctor to refer you to a geneticist so that they can answer any questions you may have.

Take care, Shireen

London

England

-----Original Message-----From: PB2X_Banshee [mailto:pb2x_banshee@...]Sent: 19 October 2004 13:33blepharophimosis Subject: blepharophimosis Re: News from Caroline and ScandinaviaHi I found your post on the group. I was born with blepharophimosis and now i am married and live in southern sweden. would like to chat with people about it. i cant seem to find enough info about the disorder. two years ago i was told that i had premature ovarian failure that is realated to the syndrom. I do hope to hear from you soonAmi

[Guest guest]

Do u have any pix of your daughter and yourself...and your other family members? Our son has blephs, the ONLY one in the whole family to have it? So don't know where it came from genetically, but our Dr says...*It has to start somewhere*

Our wee guy is 21 months old:) The happiest wee man too:) full of smiles and laughter...his smile lights up the room, there are pix of him at the site...under ethan, the younger ethan (as there are two ethans) he is wearing the pumpkin costume.

You are very lucky to have a baby! We have read about the 2 types of bleph, and one type cannot have babies, thats very sad.

If you have pix, please post them, always nice to see a new face:)

-- RE: blepharophimosis Re: News from Caroline and Scandinavia

Hi Ami!

I'm also new to this group. I'm 27 years old. My name is Stina and I live in Sweden and I'm married and have a little girl of 3 months, Alice.

I was born with blepharophimosis. My father has it as well as my brother and sister. And, I'm sorry to say, my little girl has it too...

I have taken her to see a doctor and she will probably have some surgery when she is arond 3 years old. I had surgery when I was 6 and again when I was 17.

I would love to have contact with you, if you want to!

If you are interested you can send me a mail at stina_ls@...

Best wishes StinaAndy Bowles & Shireen Mohandes <andy.bowles@...> wrote:

Hi Ami

Welcome to the group.

Here are some good sources of information:

http://freespace.virgin.net/andy.bowles/page6.html

You should definitely take a look at the first one, as it is pretty comprehensive.

I recommend that you ask your doctor to refer you to a geneticist so that they can answer any questions you may have.

Take care, Shireen

London

England

-----Original Message-----From: PB2X_Banshee [mailto:pb2x_banshee@...]Sent: 19 October 2004 13:33blepharophimosis Subject: blepharophimosis Re: News from Caroline and ScandinaviaHi I found your post on the group. I was born with blepharophimosis and now i am married and live in southern sweden. would like to chat with people about it. i cant seem to find enough info about the disorder. two years ago i was told that i had premature ovarian failure that is realated to the syndrom. I do hope to hear from you soonAmi