Naomi's BPES

[Guest guest]

Seems as though Naomi is the only one getting taped instead of surgery.

Writing to clarify some things.

Naomi's eye surgeon thinks that Naomi has little or no levator

function, which means that her muscles that control upper lid

opening don't work or exist at all. This was based on

her regular assessments of Naomi's spontaneous eye opening.

The eye surgeon feels that Naomi should wait until she is able to

fully co-operate with the surgeon before getting any surgery

done. She intends for the surgery to be done under

local anaesthetic so that Naomi would be able to open

and close her eyes when instructed, so that the degree of lid

opening can be determined. She feels also that a native TFL graft

would work best (as opposed to silicone rods and cadaveric

fascia) as there is a lesser risk of tissue rejection.

The local ophthalmology and plastic surgery community seems to have

seen only a handful of BPES cases here in Singapore. One

eye surgeon estimates that she has seen only 5 cases in her

20+ years of clinical practice! So, we think that

Naomi's condition is a rarity here in Singapore.

We have yet to get genetic testing done for Naomi as she exhibits the

full spectrum of BPES; so, based on the clinical features, the

diagnosis is almost 100% certain. We are contemplating genetic

testing only to identify which type she has, so we can prepare her in

future regarding early ovarian failure and potential subfertility.

Ern C.