About Us.

[Guest guest]

Hello all,

Just a short note to introduce me and my family. We are in

Manchester England. I have a daughter Nicola who is 16 and who has

bleph but she also has severe learning difficulties. Her named

syndrome is " Ohdo Syndrome " or Ohdo-like Blepharophimosis

Syndrome " !! Its quite rare but over the years I have (through the

internet) made some good contacts and have found support with other

families is so important. Im sure you will agree. My biggest

problem with Nicola is the fact that she has virtually no speech. I

find it difficult to know how Bleph. affects her. It was only

through meeting Shireen who told me how light affects Nicola's

eyes. Nicola does not like being in sunlight nor does she like

cameras (I assume it must be the flash). Nicola was never offered

surgery, in fact we were never offered anything as they

(specialists) had never come across this 'look' before. I feel now

it would be more cosmetic because Nicola copes extremely well. I

will attempt to put photo on!! Well so much for my short note!! I

will just finish off to tell you I also have a son of 22 with whom I

could not manage without as sadly my husband died when Nicola was 3

and was 9. Well thats us. I would be very interested to

hear of any tips for Nicola and whether anyone else has a child with

Ohdo Syndrome or even heard of it. Thanks for taking the time to

read this.

Pat Seville

[Guest guest]

Hi there Pat.. Sounds like you do very well on your own. Never heard of the syndrome, sorry. I have a son Ethan with BPES who is a couple of days off turning 5. We live in Nz and had an awesome surgeon to do Ethans surgery and boy he looks so different. He has photos on the site .. you might want to check them out.. Take Care

Leah

blepharophimosis About Us.

Hello all,Just a short note to introduce me and my family. We are in Manchester England. I have a daughter Nicola who is 16 and who has bleph but she also has severe learning difficulties. Her named syndrome is "Ohdo Syndrome" or Ohdo-like Blepharophimosis Syndrome" !! Its quite rare but over the years I have (through the internet) made some good contacts and have found support with other families is so important. Im sure you will agree. My biggest problem with Nicola is the fact that she has virtually no speech. I find it difficult to know how Bleph. affects her. It was only through meeting Shireen who told me how light affects Nicola's eyes. Nicola does not like being in sunlight nor does she like cameras (I assume it must be the flash). Nicola was never offered surgery, in fact we were never offered anything as they (specialists) had never come across this 'look' before. I feel now it would be more cosmetic because Nicola copes extremely well. I will attempt to put photo on!! Well so much for my short note!! I will just finish off to tell you I also have a son of 22 with whom I could not manage without as sadly my husband died when Nicola was 3 and was 9. Well thats us. I would be very interested to hear of any tips for Nicola and whether anyone else has a child with Ohdo Syndrome or even heard of it. Thanks for taking the time to read this.Pat Seville