myeye.click Hello, I am the right eye of Jaume. Left eye is blind. I have congenital glaucoma, and I need advice and help.

This is a project based on voluntary participation to get support and promote research on Glaucoma (*)

Welcome


I have congenital glaucoma, and last year I started to really lose vision quite fast. I went to doctors, as I did all my life, but last doctors give me unclear, and even opposite opinions about my case. I ended up having two options: or I sit and wait, or I try to get help from people. Myeye.click is the answer to the problem.

Glaucoma:

is a group of diseases that damage the eye’s optic nerve and can result in vision loss and blindness.
No. There is no cure for glaucoma. Vision lost from the disease cannot be restored.
[1].

My eye's data made public


  • The left eye is blind since my first months of life.
  • The right eye, has a 40% of optic field active. I can drive a bike during the day. I read better screens with dark background than paper

In this section I publish all the data I have related to my eyes.

The data is published in a time line as surgeries, clinical tests and doctor' reports.

I will be updating my data with new tests and so on. If tou miss any clinical tests that could be interesting to take, please, use the contact for below to tell me.

 


My data made public

All my personal data related to glaucome from 1968 till today is available from here.

Access to myeye data

talk.myeye.click

An space for discussion: Doctors opinions, patients support, everybody Q&A

Discuss my case at the forum

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Get involved


This is a non-commercial project with the following main goals:

  • To publish all my personal data related to my eyes" surgeries, clinacal tests, and doctor's reports.
  • To open a discussion about myeye. How to stop my blindness? What options I have?
  • To propose others to share their glaucoma personal data in order promete and support clinical reseach and data science research at once.


For glaucoma people:

If you have glaucoma and you want researchers to focus on our sickness, you can share your personal analysis related to your eyes, as I do, for research.

In case you want to know more, please contact us through the contact form.

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My case:

Help others affected by glaucoma informing and sharing all the data published in this site. I work as a postdoc at VDA group at KU Leuven. As Visual data researcher I always find the same problem: not access or too late access to health data. Data deidentification is difficult, expensive, slow. The personal data privacy protection harms research projects involving health data. The rules of privacity, in the context of data research are mal-functioning. As a glaucomatic who's vision is worse I'd like more researchers working with glaucoma related data. Since the data related to my eye is mine, I can decide to make it public with a licence that allow scientific research.


For doctors:

For Doctors and other glaucoma related specialist and clinical staff, Myeye.click offers real patient case data, and an space to discuss, talk, advice, and comment cases.

Very soon (Setember 2016) the space for discussion will be launched.

Keep tuned.

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For data researchers:

We try to incentive state-of-the-art research. In the near future, we hope to get more glaucoma patients sharing their data openly as I did. So more researchers can be attracted by healt data easy accessible, license allowing use and publication, and well-formed, ready to download and run. From myeye.click we will support publications that use data published in myeye site.

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Contact Me


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