database

[Guest guest]

Hi Rob, e.a.

In response of earlier attempt to get people together to make a

database I think you could be a great contributor!

I am very happy to be expecting a second child. I won't be working

till the end of the year from June on. I would love to get this

thing (the dB) started for our own and future purposes. Who else

wants to help me get this going? , , Kent, Sally are you

still game? I can contribute from June on, after I finish this

thesis, anyone with experience in restoring/conserving/recreating

faux marmble scheme's... ha, ha, just kidding.

Bernice

-----Oorspronkelijk bericht-----

Van: Rob [mailto:rawatson@...]

Verzonden: vrijdag 2 januari 2004 12:51

Aan: blepharophimosis

Onderwerp: Re: blepharophimosis Nystagmus/Strabismus

> You were by no means blathering on. Prepare for some blatherskite

tho

> (haha)

>

> I thank you for responding with so much wonderhul data. Medical

> terminology is extremly difficult for me.......but I am pressing

> forward and gaining in knowledge.

It's like another planet, isn't it? I wish I'd gone to a school that

taught Latin or ancient Greek, so I could make sense of what the

medical

boffins are on about!

> To clarify and correct my errors=.(a) can you find the proper

> spelling for me? Yes I can! The proper spelling is Keratoconus. I

am

> understanding this is a disease of the cornea.

Ah! Thanks, now THAT's in my dictionary. And I can do a Google

search,

revealing all sorts of goodies. Check out http://www.kcenter.org/

and

http://www.nkcf.org/ for example (maybe you have already?).

> I am a poor candidate for transplants due to Chronic Allergic

> Conjunctivitis and the fact my eyes dont shut properly and I have

an

> incomplete blink etc.....I had silicon eye shunts placed in the

upper

> eye tear ducts in an in office procedure in Portland Oregon at the

> Casy Eye Institute on October 4 2002. By DR RODGER DALY. This was

to

> dam up my eyes so they would be more moist. It has helped a bit.

Do " they " know what the allergic reaction is caused by? (I.e. what

are

your conjunctiva allergic to?)

Incomplete closing is sometimes associated with (over-enthusiastic?)

ptosis repair, too. I've had my lower tear ducts fiddled with (no

shunts, luckily) but not the uppers. Eye dryness is common with BPEI

folks, although I've had the opposite problem: watery eyes.

> DR.DALY stated I am a poor candidate and hes not sure if I have

> Keratconus but concures with DR JEEHEE KIM in Seattle and DR

RICHARD

> HOPPS in Yakima.......because he studied with DR JEEHEE and knows

> HOPP. He states I should be OBSERVED and a transplant not

preformed.

He's not sure? Hmmmm... I'd be finding out definitively. I wonder

what

he thinks observation will do? (e.g. watch for how long? and then

what?)

> From Seattle University from another surgeon DR.JEEHEE KIM stating

> she thought a transpalnt was possible on my right eye ( which is

> worse than left eye).....but states the eye would be sewn shut for

a

> year and the transplant may or may not work.

Judging by what the keratoconus web sites say (but what would they

know?

more than me at least) that seems somewhat extreme. They quote a 90-

95%

success rate with corneal transplants, although I suppose your

chronic

allergic situation might disturb that prognosis somewhat?

> All in all its confusing. I am making an appoinment this month to

see

> Opthomoligist HOPPS. At that time I will ask him EXACTLY to the

best

> of his knowledge which of these 10 core characterisitis I have I

> know one is AMBLYOPIA and if BPEI TYPE 1 the absolute diagnosis.

Confusing ain't the half of it! I hope Hopps is more optimistic than

the

other two.

Erm... amblyopia is not one of the 10 core characteristics of BPEI,

according to Elliot & Wallace (although their paper is somewhat

derivative). Their list is (hang on to your hat):

1. Blepharophimosis and telecanthus [well, derrr...]

2. Lengthening of the horizontal parts of the canaliculi, with

lateral

displacement of the lacrimal puncta [i.e. misplaced tear ducts]

3. Hypoplasia of the caruncle and semilunar fold [underdevelopment

of

the fleshy bit at the corner of one's eye, and also of whatever the

heck

the semilunar fold is!]

4. Drooping of the lateral canthus and the lateral end of the lower

lid... [makes sense, I guess]

5. Epicanthus inversus [we all know what THIS is!]

6. Ptosis [and this!]

7. Stiff, thick, smooth & taut upper eyelids, with poor surgical

cleavage thereof [and, I add as an amateur, same goes for the lower

lid

re surgical cleavage]

8. Hypoplasia of the external oculomotor muscles [which might be the

cause of common strabismus among BPEIstanis? And why my eyes get so

tired reading & driving?]

9. Flat Nasal bridge and supraorbital ridges [ah, so that's why my

glasses keep slipping down...]

10. Flat, expressionless face with stiff skin [them's fightin'

words,

but handy for playing poker]

I don't worry too much about Type I vs Type II. The differences are

not

that important for day-to-day life for some of us.

> Its time to get all these documents in order and get a final

> statement of opinion. You may be interested to know I was asked at

> the genetics clinic to get blood work done for hormone resesrch

this

> was to be a referal from the clinic to another clinic.I wont go

into

> as why I declined but I did. But I will state Insurance also

played a

> partial role.

Shopping around for decent doctors is never easy. I look for docs

who

have written papers and have specific experience with the ailment,

even

if that means going interstate or international. It's just too

important

to put up with the local hackers, sometimes. I'm not in a position

to

judge or cast aspersions on the quality of American medical

specialists.

And insurance is one topic I stay well clear of, since our (Oz)

health

insurance system is WAY different from the USA's, although it's

trending

in a similar direction, which is a BIG worry.

Hang in there!

Rob

[Guest guest]

Bernice,

> Hi Rob, e.a.

> In response of earlier attempt to get people together to make a

> database I think you could be a great contributor!

I'm happy to help out any way I can. Being an IT professional of 23

years' suffrage, I know my way around a database. Before embarking in

that direction, though, we need to be clear about what such a database

might be used for. There is also a precedent of sorts in terms of a

register of over 200 BPEI folks at the BPES Family Network. Shireen

looks after its web site at

http://freespace.virgin.net/andy.bowles/index.html and the network

itself is (was? it's been a while) looked after by Lynne Schauble (sp?

sorry, I've lost my e-mail records). So it might be more effective to

merge with that rather than start something new.

Shireen (you're part of the 'e.a.' above), if you're out there (I can

hear you breathing), can you comment? How was New Orleans - any bearing

on this?

> I am very happy to be expecting a second child. I won't be working

> till the end of the year from June on. I would love to get this

> thing (the dB) started for our own and future purposes. Who else

> wants to help me get this going? , , Kent, Sally are you

> still game? I can contribute from June on, after I finish this

> thesis, anyone with experience in restoring/conserving/recreating

> faux marmble scheme's... ha, ha, just kidding.

Let me see if I've got this straight. You're doing a thesis up until

June, then you're restoring/conserving/recreating a faux marble second

child while helping put together a BPEI database... 2004's going to be a

big year!

Rob

[Guest guest]

--- In blepharophimosis , Rob <rawatson@a...>

wrote:

> Bernice,

>

> > Hi Rob, e.a.

> > In response of earlier attempt to get people together to make a

> > database I think you could be a great contributor!

>

> I'm happy to help out any way I can. Being an IT professional of

23

> years' suffrage, I know my way around a database. Before embarking

in

> that direction, though, we need to be clear about what such a

database

> might be used for. There is also a precedent of sorts in terms of

a

> register of over 200 BPEI folks at the BPES Family Network.

Shireen

> looks after its web site at

> http://freespace.virgin.net/andy.bowles/index.html and the network

> itself is (was? it's been a while) looked after by Lynne Schauble

(sp?

> sorry, I've lost my e-mail records). So it might be more effective

to

> merge with that rather than start something new.

Very good idea if the e.a. are interested ofcourse.

> Shireen (you're part of the 'e.a.' above), if you're out there (I

can

> hear you breathing), can you comment? How was New Orleans - any

bearing

> on this?

>

> > I am very happy to be expecting a second child. I won't be

working

> > till the end of the year from June on. I would love to get this

> > thing (the dB) started for our own and future purposes. Who else

> > wants to help me get this going? , , Kent, Sally are

you

> > still game? I can contribute from June on, after I finish this

> > thesis, anyone with experience in

restoring/conserving/recreating

> > faux marmble scheme's... ha, ha, just kidding.

>

> Let me see if I've got this straight. You're doing a thesis up

until

> June, then you're restoring/conserving/recreating a faux marble

second

> child while helping put together a BPEI database... 2004's going

to be a

> big year!

Yeah right, I am not going to add this line " hope ya English

speaking folks all understand my Dutch pronounciation " to my every e-

mail.

I too love reading you funny remarks but must add that I regret the

idea that I am sure I must be missing out on half of them because

English is not my native language. Arent you lucky it is yours (it

could have been Dutch if been more persistent). The worlds at your

feet. But you Aussies knew that allready!

Bernice

> Rob

[Guest guest]

Bernice,

I didn't mean to be critical of your English. In fact, It's so good I

had no idea you aren't a native speaker. I was just trying to say that

you sound so busy my head is spinning trying to keep up. Your English is

a lot better than many other " native " English speakers, and certainly

better than my Dutch will ever be, so I'm in no position to be critical.

With that in mind, I'll try to use fewer complex phrases and

colloquialisms (oops, failed already).

Yes, Oz was very nearly Dutch, with Dirk Hartog and Abel Tasman (after

whom Tasmania and the Tasman Sea are named) and so forth exploring here.

Oz was called " New Holland " for many years in the early days. Of course,

New Zealand's name is a big remnant of that period, too.

Rob

Foot in mouth, yet again.

> Yeah right, I am not going to add this line " hope ya English

> speaking folks all understand my Dutch pronounciation " to my every e-

> mail.

> I too love reading you funny remarks but must add that I regret the

> idea that I am sure I must be missing out on half of them because

> English is not my native language. Arent you lucky it is yours (it

> could have been Dutch if been more persistent). The worlds at your

> feet. But you Aussies knew that allready!

> Bernice

[Guest guest]

Tom:

I can see that you missed your coffee in favor of mangosteen

juice. My site/group is different :-)

LDNers/?yguid=186853141

I will add your details to the database.

A

[Guest guest]

A,

Thank you...my Father always said " No use being dumb if you don't show it " .

unfortunately, I show it more often than I like. Hmmmmmm....Mangosteen,

Regards,

Tom

[low dose naltrexone] Re: database

>

> Tom:

> I can see that you missed your coffee in favor of mangosteen

> juice. My site/group is different :-)

> LDNers/?yguid=186853141

>

> I will add your details to the database.

>

> A

>

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>

>

>

>

>

>