Re: BPES and OHDO

[Guest guest]

Hi

My good friend Pat Seville has a daughter, Nicola, who has Ohdo Syndrome.

Please take a look here:

http://www.seville44.fsnet.co.uk/

Also - Pat helps to co-ordinate a small but very successful group for parents of people with Ohdo syndrome.

I highly recommend that you pass on this info to 's parents. Only a couple of weeks ago there was a get together for the group. People met up in Manchester, along with physicians and specialists. Pat did an amazing job arranging it. She is very knowledgeable about Ohdo Syndrome.

Ohdo syndrome, named after the doctor who first wrote about it, is also known as: Ohdo-like Blepharophimosis Syndrome.

I hopt that this helps you to find information and get in touch with other parents.

Take care

Shireen Mohandes

London, England

From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of rrippee77Sent: 01 December 2006 19:31blepharophimosis Subject: blepharophimosis BPES and OHDO

Hi all! My nephew, , who just turned 2 yrs old, had his check up from the geneticist(sp?), and he said also has a condition called OHDO. Are any of you familiar with that? Can anyone give me any insight to that condition? He has had liver surgery, kidney problems, and respiratory problems(especially with colds!) My sister looked online, and it said that OHDO is rare,and some people with this condition sometimes dont live long! Thats a scary thought! Any help would be appreciated! , CA.

[Guest guest]

, Hi my name is Kim, and my son Brock was diagnosed with BPES as an infant, and then later with OHDO syndrome. There is actually a group online for support that I have found, and they can answer many questions. Basically, there are many degrees of severity of OHDO. Some children are seriously ill, and others, like my son, are high functioning, and only mildly affected. I would recommend contacting the OHDO support group, or maybe having the parents contact them, and they can answer a lot of questions. Good luck and don't give up hope, Ohdo is very rare and they are still doing a lot of research about it. Kimrrippee77 <rrippee77@...> wrote: Hi all! My nephew, , who just turned 2 yrs old, had his check up from the geneticist(sp?), and he said also has a condition called OHDO. Are any of you familiar with that? Can anyone give me any insight to that condition? He has had liver surgery, kidney problems, and respiratory problems(especially with colds!) My sister looked online, and it said that OHDO is rare,and some people with this condition sometimes dont live long! Thats a scary thought! Any help would be appreciated! , CA.

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[Guest guest]

Thanks for the link, Shireen! I joined the OHDO group also. I'm grateful to you all for the help!- Shireen Mohandes <andy.bowles@...> wrote: Hi My good friend

Pat Seville has a daughter, Nicola, who has Ohdo Syndrome. Please take a look here: http://www.seville44.fsnet.co.uk/ Also - Pat helps to co-ordinate a small but very successful group for parents of people with Ohdo syndrome. I highly recommend that you pass on this info to 's parents. Only a couple of weeks ago there was a get together

for the group. People met up in Manchester, along with physicians and specialists. Pat did an amazing job arranging it. She is very knowledgeable about Ohdo Syndrome. Ohdo syndrome, named after the doctor who first wrote about it, is also known as: Ohdo-like Blepharophimosis Syndrome. I hopt that this helps you to find information and get in touch with other parents. Take care Shireen Mohandes London, England From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of rrippee77Sent: 01 December 2006 19:31blepharophimosis Subject: blepharophimosis BPES and OHDO Hi all! My nephew, , who

just turned 2 yrs old, had his check up from the geneticist(sp?), and he said also has a condition called OHDO. Are any of you familiar with that? Can anyone give me any insight to that condition? He has had liver surgery, kidney problems, and respiratory problems(especially with colds!) My sister looked online, and it said that OHDO is rare,and some people with this condition sometimes dont live long! Thats a scary thought! Any help would be appreciated! , CA.

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[Guest guest]

--- In blepharophimosis , " rrippee77 " <rrippee77@...>

wrote:

>

> Hi all! My nephew, , who just turned 2 yrs old, had his check up

> from the geneticist(sp?), and he said also has a condition

called

> OHDO. Are any of you familiar with that? Can anyone give me any

insight

> to that condition? He has had liver surgery, kidney problems, and

> respiratory problems(especially with colds!) My sister looked online,

> and it said that OHDO is rare,and some people with this condition

> sometimes dont live long! Thats a scary thought! Any help would be

> appreciated! , CA.

>

Hi,

my son Sylvester is now almost 9 month and we still do not have the

restults of his tests, but everybody thinks he has BPES. so did we,

untill a few weeks ago. we now think he might have OHDO, but we are not

sure. he have a low muscle tone, and some of the other problems (no

heart condition), but can you maybe help us explaining some of the

symptoms?! we have been to 3 different doctors today and his sight is

really pore, it is reduced to about 25 % of what is normal for a kid of

his age. but he is a happy beatifull boy and we just love him the way

he is, but I cant help thinking about it all the time. thanks for

reading my mail.

Lise from Denmark.