Re: scars and genetic testing for BPES

[Guest guest]

Hey ,

> Two things. I am wondering if any of the adults with BPES have had

> problems with scarring (keloid or thick scarring) on their eyelids

> (from skin grafts) or other surgeries. I had this problem with a

> specific group of surgeries and spent quite a bit of time (and

> further surgeries) to get rid of the scars. That information would

> be very helpful for me.

My surgeon did some scar tissue removal on me ( " wow - can they DO

that!? " ) in my teens, mostly flattening lumps as I vaguely recall. My

main scarring problem is that the scarred canthal skin is somewhat dry

and flakey - maybe not as well serviced by sebaceous glands and sweat

pores as unscarred skin?

Rob

[Guest guest]

Hi ,

It's Leanne here, in CHCH, How are you doing? Hows Alyssa? We hope great:)

Although we havn't looked into having any genetic testing done thus far, we would certainly like to have the names of geneticists for future reference:)...Talk soon.

Leanne and family.

-- blepharophimosis scars and genetic testing for BPES

Hi all,Two things. I am wondering if any of the adults with BPES have had problems with scarring (keloid or thick scarring) on their eyelids (from skin grafts) or other surgeries. I had this problem with a specific group of surgeries and spent quite a bit of time (and further surgeries) to get rid of the scars. That information would be very helpful for me.Other thing. I live in New Zealand and have the names of two geneticists who have specialised in BPES and genetic testing to confirm BPES. If anyone in NZ has not had genetic testing and would like the geneticists' contact information, please contact me. Thanks,

[Guest guest]

Hi Leanne, Alyssa is due to go for surgery in 2 days. This is her 3rd postponement date (the other 2 she was too unwell for surgery). Having said this, I have a cold at present which hopefully won't go to her and her Asthmatic chest and cause another postponement!!

A contact (see below) for you is Dr Shelling who is doing BPES research here in Auckland alongside others.

--------------------------------------------------------------------------- ShellingDepartment of Obstetrics and GynaecologyFaculty of Medical and Health SciencesPrivate Bag 92019University of AucklandAucklandNew ZealandPhone 64 9 373 7599 ext. 83504Fax 64 9 373 7677

blepharophimosis scars and genetic testing for BPES

Hi all,Two things. I am wondering if any of the adults with BPES have had problems with scarring (keloid or thick scarring) on their eyelids (from skin grafts) or other surgeries. I had this problem with a specific group of surgeries and spent quite a bit of time (and further surgeries) to get rid of the scars. That information would be very helpful for me.Other thing. I live in New Zealand and have the names of two geneticists who have specialised in BPES and genetic testing to confirm BPES. If anyone in NZ has not had genetic testing and would like the geneticists' contact information, please contact me. Thanks,

[Guest guest]

,

When my oldest son had one of his surgeries, not sure which one it's been years, but anyway, i do remember that they had cancelled it once before because of wheezing from his asthma. When they scheduled it again they gave him a breathing treatment just to be safe. If your daughter has asthma you could ask about giving her a treatment. Just an idea i'd thought i'd pass along.

[Guest guest]

Thanks for that . I think they are going to give her some puffs of ventolin before surgery. Is that what you mean by 'treatment' ? I am taking her to our GP today for a pre-surgery check up of her chest etc. Cross fingers that all will go ahead and she will do great tomorrow.

Will keep you all posted.

Re: blepharophimosis scars and genetic testing for BPES

,

When my oldest son had one of his surgeries, not sure which one it's been years, but anyway, i do remember that they had cancelled it once before because of wheezing from his asthma. When they scheduled it again they gave him a breathing treatment just to be safe. If your daughter has asthma you could ask about giving her a treatment. Just an idea i'd thought i'd pass along.

[Guest guest]

Hi

Will be praying that all goes well with Alyssa tomorrow. I haven`t

been here for a while but its always good to catch up on the postings

eh?

Hoping my daughter, , will come home later this year & we`ll

go see someone up there in Aucklnad - a Dr Komudi Siriwardena? He`s a

geneticist. Hopefully we`ll get a bit more information about the link

with infertility. Of course itsstill only research but without that

where would we be?

Bye for now

Maree

> Thanks for that . I think they are going to give her some

puffs of ventolin before surgery. Is that what you mean

by 'treatment' ? I am taking her to our GP today for a pre-surgery

check up of her chest etc. Cross fingers that all will go ahead and

she will do great tomorrow.

> Will keep you all posted.

>

>

> Re: blepharophimosis scars and genetic testing for BPES

>

>

> ,

>

> When my oldest son had one of his surgeries, not sure which one

it's been years, but anyway, i do remember that they had cancelled

it once before because of wheezing from his asthma. When they

scheduled it again they gave him a breathing treatment just to be

safe. If your daughter has asthma you could ask about giving her a

treatment. Just an idea i'd thought i'd pass along.

>

>

>

>

>

[Guest guest]

good luck with the surgery tomorrow, hope all goes well and it isnt too stressful for you all

Take care

blepharophimosis scars and genetic testing for BPES

Hi all,Two things. I am wondering if any of the adults with BPES have had problems with scarring (keloid or thick scarring) on their eyelids (from skin grafts) or other surgeries. I had this problem with a specific group of surgeries and spent quite a bit of time (and further surgeries) to get rid of the scars. That information would be very helpful for me.Other thing. I live in New Zealand and have the names of two geneticists who have specialised in BPES and genetic testing to confirm BPES. If anyone in NZ has not had genetic testing and would like the geneticists' contact information, please contact me. Thanks,

[Guest guest]

-Hello

I have some scarring from my surgeries as a child & teenager, but I

don`t think its a problem really. Its in the inner corners of my eyes

& I wear specs so is kinda hidden.

I am interested in the genetic testing area as well, for the sake of

my daughter. We do have a couple of names so will be making contact

with them hopefully later this year. I wonder if they are the same

names you have? Yes,we live in NZ.--

Bye 4 now

Maree In blepharophimosis , " " <andreajoyf@y...>

wrote:

> Hi all,

>

> Two things. I am wondering if any of the adults with BPES have had

> problems with scarring (keloid or thick scarring) on their eyelids

> (from skin grafts) or other surgeries. I had this problem with a

> specific group of surgeries and spent quite a bit of time (and

> further surgeries) to get rid of the scars. That information would

> be very helpful for me.

>

> Other thing. I live in New Zealand and have the names of two

> geneticists who have specialised in BPES and genetic testing to

> confirm BPES. If anyone in NZ has not had genetic testing and

would

> like the geneticists' contact information, please contact me.

>

> Thanks,

[Guest guest]

Hi Rob,

Yes, I am really interested to know about adults

with scarring problems on their eyelids. This

was a particular problem for me. I scarred badly

after a skin graft operation (when I was 15 yrs)

and then spent many years trying to get rid of

the scar tissues with other surgeries (and skin

grafts). I ended up having a series of

operations where skin was stretched and grown

through a balloon type implant in my forehead and

basically, used to replace the original

scar/eyelid tissue.

My scar tissue was quite hard (mainly in the

inner eyes) and distorted my eye shape a lot.

Both eyes also looked quite different. I still

have problems with this but it looks quite a bit

better today, but gave up on the surgeries...

(had about 16 I think on this problem, which is

far too many).

F

--- Rob <rawatson@...> wrote:

> Hey ,

>

> > Two things. I am wondering if any of the

> adults with BPES have had

> > problems with scarring (keloid or thick

> scarring) on their eyelids

> > (from skin grafts) or other surgeries. I had

> this problem with a

> > specific group of surgeries and spent quite a

> bit of time (and

> > further surgeries) to get rid of the scars.

> That information would

> > be very helpful for me.

>

> My surgeon did some scar tissue removal on me

> ( " wow - can they DO

> that!? " ) in my teens, mostly flattening lumps

> as I vaguely recall. My

> main scarring problem is that the scarred

> canthal skin is somewhat dry

> and flakey - maybe not as well serviced by

> sebaceous glands and sweat

> pores as unscarred skin?

>

> Rob

>

>

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