Your Case

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7 thoughts on “Your Case”

  1. I want to now if there are people in the Netherland (Holland) who has the same illness.
    Mine Mother had the illness also, and for 14 years ago i have lost my left eye and the right is preopperative, the english is to bad to understand evryting good bye Gerda

      1. Hi there,

        After about 9 years I have found a website that contains information about my ´Eye disease´ Eales! It´s a miracle! In 2006, I was 12 years old, the disease has been esthablished. In ONE WEEK my vision in my right eye changed from 100% to 20%. At the same time my left eye started as well.

        As in the Netherlands the disease is so rare and according to the doctors, there was no one else who was treated for this disease in the Netherlands. They didn´t know what to do or what the source was. Than they decided to laser the veins who were leaking to stop it from bleeding. I was treated from 2006 till 2010 I throught. I don´t know how often they have lasered me exactly, must be about 6 times in the right and 3 times in the left…

        Till today they haven´t found a source or reason…As I said before, this is the first personal research, as I thought there was no further conclusion or information. Also the academic terms in English are giving me not a lot of information. I am sorry for the vage answers.

        I am still concerned and confused as I don´t know where the disease is coming from. Besides why it happend so suddenly.

        I have never had another treatment besides laser treatment…Therefore and by reading all these stories I am very curious if there could be a possibilty of other treatments or reasons etc. to help me??…The academic hospital of Maastricht treats me. Nowadays they check me once a year. Till now everything is steady, But I am still afraid of more bleedings as there is no source or further research in the Netherlands.

        Dor en Frits, jullie zijn de eerste Nederlanders waarvan ik hoor waar de ziekte Eales is vastgesteld! Al die tijd heb ik gemeend dat ik de ´enige´ was…Alhoewel ik wel erg jong was, 12 jaar toen het geconstateerd werd. Mag ik vragen waar jullie in behandeling zijn en wat voor behandeling jullie hebben gehad? Het zou ontzettend fijn zijn om van jullie te horen. Ik weet niet of deze website intussen is opgeheven of nog wel bestaat, hopelijk wel!! Morgen ga ik terug voor een jaarlijkse controle bij het academisch ziekenhuis in Maastricht. Alvast bedankt!

        Well, it has been so helpfull and satisfying by only reading this website. I don´t know if the website is still existing, I hope so.

        Any reply or response to this email will be a blessing!

        Thank you so much

        Crissy Huberts
        Netherlands
        25 years old
        Female
        Tinted skin / brown haird/ light green eyes
        100% Dutch

    1. Hi there,

      After about 9 years I have found a website that contains information about my ´Eye disease´ Eales! It´s a miracle! In 2006, I was 12 years old, the disease has been esthablished. In ONE WEEK my vision in my right eye changed from 100% to 20%. At the same time my left eye started as well.

      As in the Netherlands the disease is so rare and according to the doctors, there was no one else who was treated for this disease in the Netherlands. They didn´t know what to do or what the source was. Than they decided to laser the veins who were leaking to stop it from bleeding. I was treated from 2006 till 2010 I throught. I don´t know how often they have lasered me exactly, must be about 6 times in the right and 3 times in the left…

      Till today they haven´t found a source or reason…As I said before, this is the first personal research, as I thought there was no further conclusion or information. Also the academic terms in English are giving me not a lot of information. I am sorry for the vage answers.

      I am still concerned and confused as I don´t know where the disease is coming from. Besides why it happend so suddenly.

      I have never had another treatment besides laser treatment…Therefore and by reading all these stories I am very curious if there could be a possibilty of other treatments or reasons etc. to help me??…The academic hospital of Maastricht treats me. Nowadays they check me once a year. Till now everything is steady, But I am still afraid of more bleedings as there is no source or further research in the Netherlands.

      Dor en Frits, jullie zijn de eerste Nederlanders waarvan ik hoor waar de ziekte Eales is vastgesteld! Al die tijd heb ik gemeend dat ik de ´enige´ was…Alhoewel ik wel erg jong was, 12 jaar toen het geconstateerd werd. Mag ik vragen waar jullie in behandeling zijn en wat voor behandeling jullie hebben gehad? Het zou ontzettend fijn zijn om van jullie te horen. Ik weet niet of deze website intussen is opgeheven of nog wel bestaat, hopelijk wel!! Morgen ga ik terug voor een jaarlijkse controle bij het academisch ziekenhuis in Maastricht. Alvast bedankt!

      Well, it has been so helpfull and satisfying by only reading this website. I don´t know if the website is still existing, I hope so.

      Any reply or response to this email will be a blessing!

      Thank you so much

      Crissy Huberts
      Netherlands
      25 years old
      Female
      Tinted skin / brown haird/ light green eyes
      100% Dutch

  2. Hallo,
    In 1983, 31 years old, I was diagnosed Eales disease after some floaters appeared in my left eye. I had several (xenon)laser photocoagulation first in my left eye and later also in my right eye. in the folowing years I had more laser photocoagulation and also cryocoagulation. In both eyes I had a vitrectomiy and in both eyes a lens exchange, in my left eye twice (claw lens).
    With regards,
    Frits

  3. I start a year ago… my first diagnose was Eales disease… then after several exams my eyes were worst and they diagnose IRVAN. I took prednisone, then Avastin injection and now I am taking azathriopine + cyclosporine and we will see if it’s working or not in a few months. Do you have a suggest? Any Dr. that knows about IRVAN? That have experience?

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