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- 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,