Blepharophimosis Member Introductions


#21

I have a son & grandson with Blepharophimosis my son is 34 and it was not until my grandson arrived last August that I found out anything about blephs and even what it was called.


#22

I am a Mother who has a 4 year old Son with Bleph. The 1st in our family.


#23

My name is Hope Abbott, Panama City Bch, FL. I am a mother of 2. Daughter & Son. My daughter April Bishop is 20 now and was diagnosed with Bleph at the University of South West, FL when she was about 7.
August 2006 April was evaluated by a Genetic team from the University of FL. They also diagnosed her with another syndrome that was just discovered in the last 10 years, this is Deletion of Chromosome 22. I think April still has some physical characteristics of Bleph. Of course that can not be confirmed through any type of blood work or anything so we just keep going on with hopes of learning something new that may help her cope with her situation.


#24

I am a mother of a beautiful baby girl named samantha she was born with BLEPH on Aug 31, 2006


#25

Our daughter Holly aged 2 has Blepharophimosis and is the first in the family with the condition. Holly had her first surgery Sept 2006 and is due two more operations at Moofields Eye Hospital in London.
We live in Hampshire, UK.


#26

Hi there, My husband and I have 2 sons, our first is 8 years old, born without BPES, and our 2nd son is 4 years old and he was born with BPES??? It is in neither side of our family, so just sporadic! He is just the cutest though…the most loving, effectionate wee boy you could dream of meeting. He has just had his 4 year old check up and with his new glasses he got a few months ago for his Astigmatism, his eyesight is now back to 20/20 (with glasses on) he has had no surgeries yet and will not unless his eyesight is affected, which so far has not been:)


#27

I have a two year old daughter Jessie, who is the first in our family with BPES. I am interested in anything to do with this condition as I have found that information is reasonably limited…


#28

Hi Everyone,

I am Lisa O’Brien from Ireland, and my beautiful daughter Heather who will turn 1yr old in May’07 was born with BPES. So far she is the first in our family with this condition and she has had sling surgery at 6 months to deal with the Ptosis issue. She is due to see Richard Collin in August of this year to discuss potential future surgery, as we don’t have a canthoplasy surgeon in Ireland.
Look forward to seeing you all at our new home here in Careplace!

Lisa x
Kildare, Ireland


#29

My daughter was born with Blepharophimosis.


#30

Hi. My name is Whitney and I have blepharophimosis. I am nineteen years old and finishing my freshman year at Arizona State University. I grew up in Kansas and I am the first in my family to have this condition as far as I know. I have had nearly a dozen surgeries over the course of my lifetime and am currently searching for a new surgeon to get a fresh opinion on my condition and possibilities for the future. I am hoping this network might allow me to find a new doctor.


#31

Hi my name is Tonikka , my son lynden has BLEPH he is the first and only one, he is 9 years old and had his very first suregery at 5-6 weeks old. then he had a few other surgeries after that. he currently wears glasses for his vision but his classes are convex so they magnfy hi eyes and no one really notices!!


#32

Hi my name is Brianne. My son Mehkai has BPES that is why I am interested in the condition. I would love to connect with families in the United States who have children who have this condition and get their feedback on the surgeries and how their children are coping with it.


#33

My daughter has BPES. Currently most interested in fertility management for girls with BPES.


#34

Hi, I am Deepak, my wife’s name is Lata and we have a daughter Anushka who is now almost 4 and has BPES. No other history in the family so this came out of the blue. We are coping with this and thank God that we have such an intelligent, smart child.


#35

hi my name is scott i have 3 out of 4 children with this condition the youngest just a few days old. I understand how people feel as i also have bpes, so i hope i can help others find their answers and support each other .


#36

i am a mother with a son and 3 grandchildren with condition.


#37

I have Ptosis I want to talk to others who have spent years with this condition as i have.


#38

My 11 year old son has blepharophimosis.
He has not had the surgery.
He is a happy, successful kid.
I am wondering when he will be asking for the surgery. Currently, our doctors are saying that the surgery is not necessary.


#39

My son and grand daughter have bleph


#40

Our 3-year-old daughter has Blep.