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You can possibly contact Anne R.Greenlee,PhD

research scientist

director,midwest agriculture center

Marshfield medical research foundation

1000 N.Oak Ave

Marshfeild ,WI 54449

or fax 715 389 3808

or email question greelea@...

--------------Original Message-------------

From: ncs@...

Date: Tue, 29 Oct 2002 15:17:13 -0800

Subject: [ ] Research opportunity!!

>Our small non-profit Health Promoter program has been working for the last 3

years providing diabetes education and screening with the Latino population in

our rural community in Oregon. The population is migrant and seasonal

agriculture workers of primarily Mexican origin from rural areas of Mexico. We

expected that blood sugar testing and evaluation would identify 10-15% of those

tested to be at high risk for diabetes. However, of the approximately 2500

people tested, only 5-6% were identified as high risk. We unfortunately, do not

have the resources to explore the possible reasons for this finding. Would

anyone be interested or know of a university program that would like a little

research project?

>

>Margie Dogotch and Sprager, NCS Program Managers

>

>Nuestra Comunidad Sana

>212 Fourth St. / P.O. Box 1217

>Hood River, Oregon 97031 USA

>541-386-4880 (voice)

>541-386-5802 (fax)

>ncs@... (e-mail)

>www.gorge.net/ncs (website)

>

>

>

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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  • 1 year later...

Hi ...What is the procedure for dilating the pupils?....No, he has never done that before!

I will have to go back to old messages that I have printed, to read what info you sent on the dr's in Auckland, I print off certain messages from everyone, and keep everyone seperate, I have yours, so will do that:) How is Alyssa doing anyway?...Do you have any more photo's to share of her? would love to see them, Only have the one's of her when she was a wee new-born...Take care:)

Leanne

-- Re: blepharophimosis Reply

Hi Leanne, I think I gave you some time ago details of the Dr's in Auckland. I wondered if you followed anything up to see if you could get a 2nd opinion?

Aly's specialists do a whole variety of tests depending on who we see. As I've mentioned she is perhaps a more complicated case having 2 syndromes therefore they monitor her very closely. I do perhaps think that you would benefit from a 2nd opinion if for no other reason that to put your mind at rest. I do know that Auckland Hospital have some of the best specialists in the country. Some of them come from private practices in Auckland.

As for the digital pic, Dr dims the lights and uses a small torch to get the same effect, amongst other tests. Have they ever dialated his pupils to see the 'back' of his eye's? This apparantly checks their vision.

blepharophimosis Reply

- do you know of an ophthalmologist in Akl called ? Apparently has an interest in eye problem genetics at Akl Hospital. s surgeon in Rotorua has written to her ( V) to enquire about the blood tests re potential infertility & bleph. My doc also is going to get me some contact at the Genetic Counselling Services in Akl. Have u heard of them

Hi Maree, Alyssa sees at the Eye Clinic approx every 3 months to monitor her sight etc. She also sees Sloan at the same clinic who is her surgeon for the "cosmetic" (hate that word) side of things. She sees another lady who monitors Aly's vision in connection with the Duanes Syndrome she has. Duane's has made things a little more complicated because it affects the muscles and nerves in the eyes. We also keep contact but not regularly, Dr Salim Afftimos at the Genetic's Clinic (lovely guy but I think he only deals with children). There is another lady there who is a Geneticist. Salim seem quite up with BPES and keeps check on Aly's Development and can refer her to various departments should she ever need any more medical workers. It was him that Diagnosed Alyssa at 3 weeks old. It's great how all her 'specialists' work together and keep each other informed.

It will be the Genetic Clinic that will arrange blood tests etc and give you all the details.

If you are planning to come to Auckland, I would love to meet with you, let me know. I'm happy to give you my mb number. Let me know how you get on.

Have you seen anyone in Ak in the past for you or your daughter? Has your Surgeon in Rotorua dealt with BPES before you and your daughter?

Our GP (lovely lady) knows nothing about BPES or Duanes. We have totally relied on the specialists at the Hospital and this group for information and support. I am wondering where you've gotten the medical help from in the past for you or your daughter with BPES?

Regards,

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Thanks Suzy, actually your mail reminds me of some similar tests they did on Aly only recently. Including a 3-D Test for small children where they can tell that Aly could see the underlying picture because she would point to it on the card. Do you know what the other condition was that the study was about? These tests they did on Aly, was more in connection with her Duanes Syndrome rather than BPES.

I also wanted to mention one day when in the garden with Aly, she followed an ant on the ground with her finger, thought it was great fun. This also helps to give us assurance of her vision and from what distance. Perhaps something you might try Leanne to give you some assurance before his 18 Month check. Just a thought. About the pic, I don't have any recent of Aly at the moment but am working on getting some soon to share.

Regards,

blepharophimosis Re: reply

,Liliana's opthamologist dialated her eyes to check them as well, but we also had her vision tested at University Medical Center here in Tucson, AZ by the doctors holding up cards that had a square of black and white sripes on one side and nothing on the other side. It was actually part of a nation wide study that recently got a lot of recognition. The focus of the study however, was really focused on another condition which Liliana doesn't have, but we have a relative who was involved in conducting the study. Anyways, if the stripes were on the left and she looked to the left at them then they knew she was seeing them. If she looked to the right then they could tell that she wasn't seeing the stripes. At some point the children do have a hard time deciphering the stripes from the solid color because the stripes progressively got thinner and closer together as the test went on. They can test both the monocular and binocular vision this way and can award you a score so to speak (similar to 20/20). So we'll see if this method of infant vision testing catches on, but it was a great help to us! We alreadly knew that Liliana was seeing great since she's constantly a curious little one taking in everything, but it was great to know the results that Lili see's on the high end of what her age range typically does. Plus we as parents could see exacly what the doctors were seeing as to results or reactions, so it really put our minds at ease and we didn't question the diagnosis. The study was part of a study at the University of Arizona by a Dr. Dobson. Just some info for ya, maybe we'll see this becoming more common in the future! Have a great week! -Suzy > Leanne,> It is my understanding that dialating the eye is the only way to see how good vision is in infants/babies as obviously they can't read a chart, unless someone can tell me different? It is the eye specialist Dr who monitors Aly's vision. She had this done at 3 months (I think) and again at 12 months old. Thats how we know she has 20/20 vision. She put some numbing drops in her eyes and then some special drops (which sting) to dialate her pupils to enable her to look at the back of the eye and test her vision.> I assumed that this was the 'normal' thing to do with any child who 'may' have vision impairment. Can anyone comment on this?> Regards,

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