new technique for surgery?

[Guest guest]

Dear all,

It has been a while since Ive written anything on this group, but I have been

following the messages quite often. My son was diagnosed in May with Bpes and

at 7 months he had his first surgery. The past 8 months has been very tiring,

going through doctors after doctors, flying around back and forth with an

infant. Nonetheless, it was a very sucessful surgery and my son is now healed,

and they heal very fast! We are now looking forward to our life ahead with him

now that we know that bpes is not so bad, it is really how you look at life =)

At the beginning it was very difficult, but for anyone who is just going through

this phase, it does get better.. and eventually we forget about bpes and life

goes on happily.

I live in Asia, and would like to know how many other people here are also from

Asia.

I have been told that the epicanthoplasty surgery to increase the length of the

eyes which many patients with Bpes undergo is similar to the " double eyelid

surgery " for many Asians, mostly done for females in Korea and Japan. The

number of double eyelid surgeries are stunningly extremely high in Asia and many

of these surgeries also include epicantoplasty to diminish the " mongolian fold "

in the corner of the eyes. The mongolian fold is a fold very similar to the

epicanthus inversus but just folds down instead of folding up. Nonetheless,

Koreans and Japanese undergo these surgeries on a daily basis and I have been

told that it will also work for epicanthus inversus. Very recently, there is a

new technique that is highly sort after called the " no scar epicanthoplasty " and

the " magic epicanthoplasty " where they minimize scarring until almost invisible.

I am not sure how many of the members here knows what im talking about, but if

you do, i really would like more information on this. I will be travelling to

Korea to sort out doctors and ask more about this technique and if it will be

good for bpes patients like my son and will post my findings up.

Again, this email is not suppose to be pro-surgery as I dont want to upset some

of you who do not think surgery is needed. My son's first sling surgery was

very sucessful and we go everywhere without anyone noticing what is wrong with

him unlike before surgery. Like many of you, we had our first surgery in the

UK at fields.

Hopefully we can all join together and find the best place for surgeries (if

they are needed) and new techniques that might be available to us from all over

the world. I know that many of you share my feelings when there is nothing in

the world that I would not do for my son. This group has brought together many

bpes/family members and I am already very grateful as it has helped me through a

dark tunnel. Now that I am close to seeing the light, that I have the courage to

write back this post.

Another very important topic Id like to ask, is that since Bpes is very rare, is

there a research group or some sort of foundation into this in the world as I

think there are many questions that still go unanswered. If not, should we all

try to start one?

Louise