Re: I dont want this to sound rude....

[Guest guest]

Hello,

My daughter has BPES and is now nineteen years old and possibly undergoing a minor surgery on her eyes before the end of the summer. The possibility of applying for social security disability benefits for her has never come up. She had lid surgeries before she was three years old that were covered by insurance and other than some speech therapy that continued until she was in about 4th grade has not needed any other type of intervention. She is not disabled in any way- her eyelid structure looks different and in fact, she always did well in school and even graduated as a member of the National Honor Society.

I don't know what the intentions of the person recommending Social Security were/are but I wanted to let you know that it has never been up for discussion in our home regarding my daughter and her BPES.

When she was born in 1989, I knew something was different about her eyes, talked to the attending pediatrician about my concerns, talked to an eye doctor when she was about sixth months old and continued to feel very alone and helpless until finding a young ophthalmologist that helped me to understand what was going on. My daughter is to my knowledge, the only one in both my husband's and my family to be born with BPES so we were in unknown territory.

During the past year, we have been working with a pediatric ophthalmologist, a gynecologist (for some of the potential fertility/period issues that can be a part of BPES), seen a genetic counselor, and an occuplastic plastic surgeon. We are waiting for insurance approval for a minor corrective procedure that will help continue to protect her vision. It has also been recommended that we see a fertility specialist due to potential fertility issues.

My daughter will be attending her second year of college in the fall and seems to be a fairly well rounded young adult.

I apologize for the length of this response-this journey that you and your family are on is just in its early stages. There is much joy in raising a daughter and I hope you have a supportive family and access to a doctor that will listen to your concerns and will learn about this syndrome so that he/she can help you find your way to the best treatment strategies or interventions.

Take care.

From: kellymconover <kellymconover@...>Subject: blepharophimosis I dont want this to sound rude....blepharophimosis Date: Saturday, July 5, 2008, 10:25 PM

My 4 month old daughter has BPEI and I was told by someone to look into getting Social Security for her... What?? Is there any way this is possible or is someone just talking out of their ass? Can anyone help me?

[Guest guest]

Hello

Its Clare Teale Hertfordshire UK here

Am I right in thinking that someone has suggested you get a social security number for her to enable you to claim disability allowance!!!!!

I think someone is talking out of there back side!!!!!

I have BPES and so does my daughter Emy, neither of us have any other issues at all, certainly none connected with BPES.

I train people with disability in gaining employment and the majority of these people have been told at some point in their lives they are unable to function within the realms of usual life. Even for people with disability this is not right!!!

I really hope the person that told you this information is not a health care professional.

Just love and care for your daughter and give her as much confidence as she deserves, oh and teach her to smile

This website is great for asking questions and getting information, so you are absolutely in the right place.

Love to you and yours

Clare Teale - Herts UK

From: kellymconover <kellymconover@...>Subject: blepharophimosis I dont want this to sound rude....blepharophimosis Date: Sunday, July 6, 2008, 4:25 AM

My 4 month old daughter has BPEI and I was told by someone to look into getting Social Security for her... What?? Is there any way this is possible or is someone just talking out of their ass? Can anyone help me?