{"id":6444,"date":"2021-12-07T11:55:00","date_gmt":"2021-12-07T10:55:00","guid":{"rendered":"https:\/\/ver-ooginoog.nl\/bibliotheek\/finding-out-you-have-microphthalmia-after-50-years\/"},"modified":"2026-09-15T15:57:42","modified_gmt":"2026-09-15T13:57:42","slug":"finding-out-you-have-microphthalmia-after-50-years","status":"publish","type":"library_pt","link":"https:\/\/ver-ooginoog.nl\/en\/library\/personal-stories\/finding-out-you-have-microphthalmia-after-50-years\/","title":{"rendered":"Finding Out You Have Microphthalmia After 50 Years"},"content":{"rendered":"<div class=\"wp-block-post-date\"><time datetime=\"2021-12-07T11:55:00+01:00\">07 December 2021<\/time><\/div>\n<p class=\"wp-block-paragraph\">Georgette: \u201cI remember clearly that Marijn texted me a few weeks ago: \u2018It actually has a name! Did you know there\u2019s a separate patient organization for people with the same condition as me? It\u2019s called microphthalmia.\u2019 Goosebumps! After 50 years, finally knowing that your daughter isn\u2019t the only one. Fifty years ago, nothing was known about it at all.\u201d<\/p>\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:33.33%\">\n<div class=\"wp-block-image\">\n<figure class=\"aligncenter size-full is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"400\" height=\"555\" src=\"https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/tn_Marijn_Stienstra_plakboek__2_.jpg\" alt=\"\" class=\"wp-image-2285\" style=\"aspect-ratio:0.75;object-fit:cover;width:226px;height:auto\" srcset=\"https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/tn_Marijn_Stienstra_plakboek__2_.jpg 400w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/tn_Marijn_Stienstra_plakboek__2_-216x300.jpg 216w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/tn_Marijn_Stienstra_plakboek__2_-360x500.jpg 360w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/tn_Marijn_Stienstra_plakboek__2_-270x375.jpg 270w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/tn_Marijn_Stienstra_plakboek__2_-124x172.jpg 124w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/tn_Marijn_Stienstra_plakboek__2_-55x76.jpg 55w\" sizes=\"auto, (max-width: 400px) 100vw, 400px\" \/><\/figure>\n<\/div>\n<\/div>\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:66.66%\">\n<p class=\"wp-block-paragraph\">\u201cIn 1971, Marijn was born as our second daughter\u2014a healthy, lively, and cheerful baby. We were overjoyed. Our little one had her right eye closed on the first day. Peter and I hadn\u2019t noticed anything. The next day, she still had that eye closed. I said to the midwife, \u2018That\u2019s strange\u2014she\u2019s keeping one eye closed.\u2019 \u201cDon\u2019t worry, lots of babies do that when they\u2019re first born. She\u2019ll be fine!\u201d was the reply. On the second day, Marijn\u2019s other eye opened, and I was so startled because that eye was much smaller. The midwife noticed this too. She was very upset and apologized for not having seen it sooner.\u201d   <\/p>\n<\/div>\n<\/div>\n<h2 class=\"wp-block-heading\">What now?<\/h2>\n<p class=\"wp-block-paragraph\">Somewhat emotional, Georgette continues: \u201cPeter and I were completely devastated. What was going to happen to our little girl? What would her future look like? We cried a lot. Peter was in the military, and we\u2019d had a weekend wedding. I sought help everywhere and, even though Marijn wasn\u2019t even two months old yet, made an appointment with the ophthalmologist at the Elisabeth Hospital in Alkmaar. Her eye was examined, but the doctor couldn\u2019t make a diagnosis. \u2018This is a rare condition, and there\u2019s nothing that can be done about it,\u2019 the doctor said. As a 23-year-old mother, I left the hospital in the rain, crying as I pushed the stroller. I even thought to myself, \u201cI\u2019m so glad it\u2019s raining\u2014that way, no one will see me crying.\u201d Three months later, we moved from Alkmaar to Ede. While we were living in Ede, there were no hospital visits. When Marijn was just four years old, we moved to Nunspeet. From that moment on, my search for a diagnosis and help continued. I thought, \u201cI\u2019m not going to let it end here! She might run into problems later, or she might get bullied.\u201d Peter and I wanted to give her a good future.\u201d<\/p>\n<p class=\"wp-block-paragraph\">\n<h2 class=\"wp-block-heading\">God decides&#8230;<\/h2>\n<p class=\"wp-block-paragraph\">\u201cDuring that time, we went to see the family doctor several times. The doctor said\u2014and I\u2019ll never forget this: \u2018There\u2019s nothing that can be done about this, ma\u2019am; just accept it. It\u2019s a congenital condition, and it\u2019s God\u2019s will.\u2019 I found this so upsetting that I managed to get him to write a referral to the VU in Amsterdam. I wanted her condition to be examined at the academic level to determine what was wrong with her eye. We wanted to do everything within our power for Marijn! It was a huge relief to be able to discuss the situation with highly trained specialists. They were completely open to it and were all so friendly and understanding. It was just such a warm and welcoming experience!\u201d<\/p>\n<p class=\"wp-block-paragraph\">Marijn\u2019s eye was examined thoroughly. Unfortunately, there was no other news. \u201cIt\u2019s an abnormality, but we can make sure she gets fitted for a <a href=\"https:\/\/ver-ooginoog.nl\/en\/types-of-eye-prostheses\/\" data-type=\"page\" data-id=\"851\">prosthetic eye<\/a>,\u201d said the specialists at the VU. The family doctor had never mentioned this option to us. But at that point, her eye abnormality still hadn\u2019t been diagnosed.\u201d    <\/p>\n<h2 class=\"wp-block-heading\">First Eye Prosthesis<\/h2>\n<p class=\"wp-block-paragraph\">With a big smile, Georgette says, \u201cThat\u2019s how Marijn first came into contact with a prosthetist at the age of eight: the M\u00fcller company, at a hotel on Vredenburg in Utrecht. The glass prosthesis was fitted right away, and when she walked through the Hoog Catharijne shopping center, holding her parents\u2019 hands, she kept looking in the store windows and saw herself in a whole new light. She looked so beautiful! It was a truly moving moment for us.\u201d<\/p>\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:66.66%\">\n<p class=\"wp-block-paragraph\">Marijn continues: \u201cWe didn\u2019t know back then that it had a name or that there were other people with a <a href=\"https:\/\/ver-ooginoog.nl\/en\/anophthalmia-and-microphthalmia\/\" data-type=\"page\" data-id=\"600\">small eye<\/a>. It wasn\u2019t until I visited the ocularist that I saw a girl with two smaller eyes for the first time. I can still picture it now. I wasn\u2019t the only one. No one around me had the same condition as I did. I still remember that visit to the ocularist very well. There were all kinds of glass eyes in a big box. They looked to see which color suited me, and then the prosthesis was custom-made. They pressed a sort of shoehorn into my hands. After that, they instructed me on how to remove my prosthetic eye. It was actually more like \u201cpopping it out.\u201d By the way, I have a whole collection of all my prosthetic eyes.&#8221;  <\/p>\n<\/div>\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:33.33%\">\n<figure class=\"wp-block-image size-full is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"400\" height=\"541\" src=\"https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/tn_Marijn_Stienstra_plakboek__5_.jpg\" alt=\"\" class=\"wp-image-2286\" style=\"width:245px;height:auto\" srcset=\"https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/tn_Marijn_Stienstra_plakboek__5_.jpg 400w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/tn_Marijn_Stienstra_plakboek__5_-222x300.jpg 222w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/tn_Marijn_Stienstra_plakboek__5_-360x487.jpg 360w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/tn_Marijn_Stienstra_plakboek__5_-270x365.jpg 270w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/tn_Marijn_Stienstra_plakboek__5_-124x168.jpg 124w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/tn_Marijn_Stienstra_plakboek__5_-55x74.jpg 55w\" sizes=\"auto, (max-width: 400px) 100vw, 400px\" \/><\/figure>\n<\/div>\n<\/div>\n<div class=\"wp-block-group is-nowrap is-layout-flex wp-container-core-group-is-layout-8f761849 wp-block-group-is-layout-flex\">\n<h2 class=\"wp-block-heading\">Bullied<\/h2>\n<\/div>\n<p class=\"wp-block-paragraph\">\u201cAt preschool in Ede, the other kids ignored me because I looked different. I didn\u2019t have any friends there. During recess, I always played by myself. Even the teacher was very unkind. Fortunately, this changed when we moved to Nunspeet. In my first school photo, you can see me with two braids and my prosthetic eye in. At first, my prosthetic eye drew a lot of attention at this school. My sister Fransje was very protective of me; for example, if I got sand in my eye with the prosthesis, she\u2019d come right over to check if I was okay. At school itself, I didn\u2019t need any special accommodations.        <\/p>\n<p class=\"wp-block-paragraph\">I do notice that it bothers me when people walk on the wrong side. I\u2019d like them to walk on my left side, because then at least I can see them. I hate square tables because there are only two places where I can sit: on the far right. I never want to sit in the middle, nor at round tables, because then I\u2019m always missing a tablemate on one side. Getting my driver\u2019s license wasn\u2019t a problem; I only had to take an eye exam at the doctor\u2019s office once. Never again after that. I don\u2019t like driving in the dark or in the rain. But I\u2019m very careful with my good eye!\u201d       <\/p>\n<h2 class=\"wp-block-heading\"><strong>Would it have made a difference if you had been in touch with other parents?<\/strong><\/h2>\n<p class=\"wp-block-paragraph\">Georgette: \u201cOh, absolutely! It makes you feel less alone. I really missed having other people\u2019s support. We didn\u2019t have a phone at home back then, so I always had to walk to a pay phone to get in touch with others. As soon as we could, we bought a phone. Later\u2014in high school\u2014Marijn would sometimes come home from school looking sad. She\u2019d been bullied again, and sometimes people had said such hurtful things to her.\u201d<\/p>\n<p class=\"wp-block-paragraph\">Marijn: \u201cEven the history teacher got in on it. I remember it well. I wasn\u2019t really paying attention, and he said, \u2018I don\u2019t know what\u2019s going on behind those eyes of yours!\u2019 I thought that was awful; it made me feel really insecure. Later, at the MEAO, things went better, and I did well there. I started doing administrative work and got a job at an administrative office in Dronten. From there, I moved into payroll and specialized in that field. I now work for the municipality of Dronten, and it doesn\u2019t bother me at all anymore. My coworkers are considerate of me and regularly ask, \u201cAm I on the right side? Can you see me?\u201d And I sometimes joke, \u201cThis is my blind spot.\u201d<\/p>\n<h2 class=\"wp-block-heading\">It actually has a name!<\/h2>\n<p class=\"wp-block-paragraph\">Marijn continues enthusiastically: \u201cLast summer, I developed an eye infection. My husband searched online and found the OOG in OOG Association. \u2018Wow,\u2019 he said, \u2018There\u2019s even a patient association for people who see with just one eye!\u2019 I immediately joined on Facebook and started scrolling through the posts. And that\u2019s when I discovered that my condition has a name: <a href=\"https:\/\/ver-ooginoog.nl\/en\/anophthalmia-and-microphthalmia\/\" data-type=\"page\" data-id=\"600\">microphthalmia<\/a>. I signed up as a member right away.\u201d    <\/p>\n<p class=\"wp-block-paragraph\">Because of my eye infection, I went to the hospital in Harderwijk for a checkup. I had taken out my prosthetic eye, and my eyelid kept closing. I noticed that people here do tend to look at it. They\u2019re naturally curious about what\u2019s going on. I was treated by a young female ophthalmologist. She also found this very interesting and had never seen anything like it before. Fortunately, the inflammation cleared up quickly. In the evening\u2014once I\u2019m sure no one is coming to visit\u2014I take out my prosthetic eye right away. I feel more comfortable that way. I still find it difficult when people (other than my family) see me without the prosthesis. I don\u2019t wear an eye patch, but I do wear an eye bandage. I feel like an eye patch stands out more.           <\/p>\n<p class=\"wp-block-paragraph\">My parents didn&#8217;t raise me to be overly protective. I was about 17 when I had to take the train all by myself to see the ocularist in Amersfoort for the first time. At first, I thought, \u201cOh man, do I really have to go all by myself?!?!\u2019 But I\u2019m really glad they gave me that push.\u201d  <\/p>\n<h2 class=\"wp-block-heading\">Strong Woman<\/h2>\n<p class=\"wp-block-paragraph\">Georgette: \u201cMarijn has been able to hold her own ever since she hit puberty. We didn\u2019t raise her to be overly protected. And by embracing the fact that she has a slight squint and now radiates the attitude \u2018I am who I am\u2019 so strongly, she has become a truly independent and strong woman\u2014but above all, a beautiful person on the inside. We\u2019re very proud of that.\u201d<\/p>\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"400\" height=\"300\" src=\"https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/Marijn-Stienstra-en-ouders.png\" alt=\"\" class=\"wp-image-2287\" srcset=\"https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/Marijn-Stienstra-en-ouders.png 400w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/Marijn-Stienstra-en-ouders-300x225.png 300w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/Marijn-Stienstra-en-ouders-360x270.png 360w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/Marijn-Stienstra-en-ouders-270x203.png 270w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/Marijn-Stienstra-en-ouders-124x93.png 124w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/Marijn-Stienstra-en-ouders-55x41.png 55w\" sizes=\"auto, (max-width: 400px) 100vw, 400px\" \/><\/figure>\n<\/div>\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<p class=\"wp-block-paragraph\">At the table, Marijn confesses for the first time: \u201cI\u2019ll admit that I did take advantage of the situation a little at MEAO. Whenever we had a ball sport, I\u2019d rather not participate. The teachers insisted that I be present in class, but I\u2019d always make up an excuse. \u2018I really can\u2019t\u2014it\u2019s too dangerous for me to participate. I can\u2019t judge depth\u2026 and my prosthetic eye might break.\u201d Great, that gave me another hour off! Later, I received a sports recommendation card. It said I could play sports with safety goggles, but I never got around to it because that extra hour off was just too nice!\u201d.<\/p>\n<\/div>\n<\/div>\n<p class=\"wp-block-paragraph\">\u201cI\u2019m so glad the OOG in OOG Association exists! Especially for young children\u2014it\u2019s wonderful that their parents can now receive such excellent support from specialists right from the very beginning. For me personally, I really appreciate being able to connect with people who are going through the same thing as I am. I\u2019m really looking forward to the National Meet-and-Greet Day!\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Marijn Stienstra lives in Dronten and works as a payroll administrator for the municipality of Dronten. Marijn was born with a smaller eye. When she was born in 1971, no one could tell her parents what it was or what consequences it might have for the rest of her life. It wasn\u2019t until half a century later that everything became clear through a Google search and a visit to the website of the OOG in OOG Association. The search for Marijn, her mother Georgette, and her father Peter is finally over. The pieces of the puzzle have finally fallen into place.     <\/p>\n","protected":false},"featured_media":6449,"template":"","meta":{"_acf_changed":false,"_daextauttol_enable_tooltips":""},"library_cat":[113],"class_list":["post-6444","library_pt","type-library_pt","status-publish","has-post-thumbnail","hentry","library_cat-personal-stories"],"acf":[],"_links":{"self":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/library_pt\/6444","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/library_pt"}],"about":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/types\/library_pt"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/media\/6449"}],"wp:attachment":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/media?parent=6444"}],"wp:term":[{"taxonomy":"library_cat","embeddable":true,"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/library_cat?post=6444"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}