Macular Telangiectasia Type 2

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Vince Says:

Has anyone been treated with Ciliary Neurotrophic Factor, Recombinant, rh-CNTF for macular telangiectasia type 2, or have you been introduced to this medication as a possible treatment?

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1
fayaz Says:

Hello Vince. I realize that your question is a couple months old and I do not have an answer for you but I have the same question as you as I have just been diagnosed with this. The troubling this is that there is no cure or confirmed treatment that will alleviate the issue from what I have read and this is very concerning. Could I kindly request that if you receieve any responses to let me know of them as well? I would highly appreciate that. Thank you. Fayaz M.

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Vince Says:

fayaz, I am interested in communicating with others that have been diagnosed with this eye disease...

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3
steve Says:

Hi folks - am 28 and been having treatment for this for 9 months now - to date i have had 5/6 lucentis injections, laser surgery etc but not the above that you mentioned. There is two more of us online that am on contact with via the rareshare site rareshare.org/communities/idiopathic-juxtafoveal-macular-telangiectasia

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fayaz Says:

Hello Vince and Steve...sorry for the late reply. I have not had any formal treatment yet. I have been put on a waiting list to see a specialist in Bethesda, Maryland where the American National Eye Institute is. I have heard from my specialist here in Canada that lucentis for my particular Mactel Type 2 non-proliferative condition may actually harm the eye further. Steve, is this what you have - Mactel type 2?....what has been the response thus far from your treatment?

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