Re: finding oculoplastic surgeons in the USA with BPES experience

[Guest guest]

Thank you very much Shireen for the helpful information!

Dawn

>

> Hi

>

> I thought it would be helpful to let people know about some research I did.

>

>

>

> This organisation:

>

> http://www.asoprs.org/home.cfm

>

> The American Society of Opthalmic Plastic and Reconstructive Surgery.

>

>

>

> They have a facility to search for members in their database, you can put in

> your state or town and it will list members.

>

> They have about 550 members.

>

>

>

> You may like to look here:

> http://www.asoprs.org/i4a/pages/index.cfm?pageid=3703

>

> As well as the frequently asked questions section.

>

>

>

> I called them up and asked them:

>

> Do all ocular plastic surgeons become a member of your organisation?

>

> She replied: " No, but most are " . She said that just because a doctor was

> not a member, it doesn't imply anything, simply that they have chosen to not

> be part of the network, or wish to benefit from it.

>

>

>

> I asked another American consultant . (a friend who is highly qualified and

> experienced specialist, but not in surgery) from their perspective, how

> would they recommend that people approach specialists.

>

> He replied:

>

>

>

> By contacting an organisation such as ASOPRS, it is such a sub specialty,

> that you are already on the right track. He said he would phone the main

> number and ask the person who took the call: Does Dr XXXX have experience

> in treating babies/children with BPES? (make sure you say either BPES or

> the full name blepharophimosis ptosis epicanthus inversus syndrome). Don't

> just say " blepharophimosis " , because this issue on its own is not the same

> thing.

>

> You would normally expect that they will call you back and reply with

> details.

>

>

>

> I expect that you could then follow this up by saying: could they tell you

> about colleagues who you could contact.

>

>

>

> I should add: if you are uncertain of the diagnosis, then the question you

> ask is:

>

> I believe that my child has: blepharophimosis ptosis epicanthus inversus

> syndrome. Please can you tell me if Dr XXXX has experience in treating

> people with this type of syndrome.

>

>

>

> It is worth noting that the speciality is so niche, that once you are in

> touch with one ocular plastic surgeon, he/she is going to be a great point

> of contact in finding another person. It takes probably more than 12 years

> of training to reach this specialty . so these people will have met many

> others, like themselves, via their training, and conferences, and should be

> in a good position to help you.

>

>

>

> I hope that this is helpful.

>

> Shireen Mohandes

>

> London, England

>