{"id":6257,"date":"2025-11-29T15:30:00","date_gmt":"2025-11-29T14:30:00","guid":{"rendered":"https:\/\/ver-ooginoog.nl\/bibliotheek\/the-rare-ice-syndrome-brought-us-together\/"},"modified":"2026-09-09T17:12:31","modified_gmt":"2026-09-09T15:12:31","slug":"the-rare-ice-syndrome-brought-us-together","status":"publish","type":"library_pt","link":"https:\/\/ver-ooginoog.nl\/en\/library\/living-with-an-eye-prosthesis\/the-rare-ice-syndrome-brought-us-together\/","title":{"rendered":"The rare ICE syndrome brought us together"},"content":{"rendered":"<div class=\"wp-block-post-date\"><time datetime=\"2025-11-26T15:34:00\">26 November 2025<\/time><\/div>\n<h2 class=\"wp-block-heading\"><strong>First, a little more about ICE syndrome<\/strong><\/h2>\n<p class=\"wp-block-paragraph\">ICE syndrome (Iridocorneal Endothelial Syndrome) is a rare eye condition that usually affects one eye, particularly in women between the ages of 20 and 50. It occurs when cells on the inner surface of the cornea stop functioning properly. This can lead to various symptoms: blurred or hazy vision due to fluid in the cornea, changes in the iris, increased eye pressure (glaucoma), and sometimes pain or halos around lights. There is no cure for the syndrome, but treatments such as eye drops, surgery, or a corneal transplant can alleviate the symptoms.     <\/p>\n<h2 class=\"wp-block-heading\"><strong>Kirsten<\/strong><\/h2>\n<p class=\"wp-block-paragraph\">Kirsten (56) lived with her family in Norway, where she worked as an offshore helicopter pilot. She had noticed as early as 2006 that something wasn\u2019t right. \u201cI would occasionally experience a flickering image. I don\u2019t know if that was related to it back then.\u201d In 2011, her symptoms became more serious. She saw halos (rings of light) around streetlights and car headlights, the whites of her eyes slowly turned redder and began to burn, and she occasionally had headaches. Her family doctor reassured her: she had just given birth to her second child, so she must be tired. \u201cSo I just carried on with my symptoms,\u201d she says.      <\/p>\n<p class=\"wp-block-paragraph\">Six months later, things took a turn. \u201cI started getting excruciating, stabbing headaches around my temples.\u201d Her primary care physician was alarmed and immediately referred her to an ophthalmologist. There, it turned out that her intraocular pressure was high\u201445\u2014and she was diagnosed with acute angle-closure glaucoma. Eye drops didn\u2019t help, and surgery to create a small opening seemed to be the solution. What followed was a years-long series of treatments and surgeries: laser treatments, injections, trabeculectomies with revisions, and drains such as an Ahmed implant and, later, a Baerveldt implant. \u201cThings always seemed to be going well for a while, but after a few months, everything had closed up again due to the ICE cells, and my pressure was high once more.\u201d It affected not only her health but also her family and her work. \u201cYou\u2019re not just giving yourself hope, but your employer as well. Going on and off sick leave, the same question kept coming up: \u2018What should we do with you?\u2019\u201d         <\/p>\n<figure class=\"wp-block-image size-large is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"683\" height=\"1024\" src=\"https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Kirsten-683x1024.jpg\" alt=\"\" class=\"wp-image-4354\" style=\"width:273px;height:auto\" srcset=\"https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Kirsten-683x1024.jpg 683w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Kirsten-200x300.jpg 200w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Kirsten-768x1152.jpg 768w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Kirsten-1024x1536.jpg 1024w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Kirsten-1365x2048.jpg 1365w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Kirsten-1920x2880.jpg 1920w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Kirsten-1140x1710.jpg 1140w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Kirsten-1000x1500.jpg 1000w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Kirsten-535x803.jpg 535w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Kirsten-360x540.jpg 360w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Kirsten-270x405.jpg 270w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Kirsten-124x186.jpg 124w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Kirsten-55x83.jpg 55w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Kirsten-817x1226.jpg 817w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Kirsten-scaled.jpg 1707w\" sizes=\"auto, (max-width: 683px) 100vw, 683px\" \/><\/figure>\n<p class=\"wp-block-paragraph\">It wasn\u2019t until three years later, in London, that she finally received the correct diagnosis: ICE syndrome. Six months later, she had to undergo surgery again. Her vision continued to deteriorate, and her intraocular pressure rose once more. Her career as a helicopter pilot in Norway came to an abrupt end. \u201cWe moved back to the Netherlands. It\u2019s amazing what an impact an eye disease like this can have on an entire family\u2019s life.\u201d    <\/p>\n<p class=\"wp-block-paragraph\">Kirstens\u2019 cornea was also affected by the syndrome. \u201cI had surgery on that several times as well, but it was beyond repair.\u201d She continued to experience pain, and light became almost unbearable. Eventually, the decision became unavoidable: her diseased left eye had to be removed. \u201cAt one point, I thought, \u2018This isn\u2019t going to get any better.\u2019 The sooner that eye is removed, the better.\u201d In March 2025, she underwent an eye removal and received an ocular prosthesis.     <\/p>\n<p class=\"wp-block-paragraph\">\u201cHaving my eye removed was emotional, but it brought me peace. No more headaches.\u201d Getting used to seeing with one eye takes time. \u201cSeeing depth is difficult, and my balance is different. Sometimes I get pretty dizzy, but the doctors say that will hopefully go away in a year.\u201d The prosthesis looks natural, but she still has to get used to it. Still, the positive feelings prevail. \u201cI step outside and can once again feel the sun on my face. I can enjoy that.\u201d     <\/p>\n<p>She remains realistic about the journey she has taken, but above all wants to show that a prosthesis can also give you freedom. \u201cI always thought: if it comes to that, it\u2019s the end of the road. But now I realize: life is getting lighter again.\u201d <\/p>\n<h2 class=\"wp-block-heading\"><strong>Ivonne<\/strong><\/h2>\n<p class=\"wp-block-paragraph\">In 2009, Ivonne (64) noticed that something was wrong with her eyes. \u201cAs I was biking to work, I suddenly saw all these circular rainbows around the streetlights. It looked cheerful, but I knew something wasn\u2019t right.\u201d Since she had just gotten divorced, she initially thought it was due to stress. Still, she went to the doctor, who referred her to the hospital. There, she got the shock of her life: \u201cThe doctor looked into my eyes and immediately said I had a rare disease. I was going to go blind in one eye.\u201d The diagnosis of ICE syndrome brought a lot of uncertainty. For years, Ivonne faithfully went for checkups, but received hardly any information about the condition. \u201cEverything I found online was in English. That made me even more uncertain.\u201d       <\/p>\n<figure class=\"wp-block-image size-large is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"683\" height=\"1024\" src=\"https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Ivonne2-683x1024.jpg\" alt=\"\" class=\"wp-image-4353\" style=\"aspect-ratio:0.6670050417893276;width:275px;height:auto\" srcset=\"https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Ivonne2-683x1024.jpg 683w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Ivonne2-200x300.jpg 200w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Ivonne2-768x1152.jpg 768w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Ivonne2-1024x1536.jpg 1024w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Ivonne2-1365x2048.jpg 1365w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Ivonne2-1920x2880.jpg 1920w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Ivonne2-1140x1710.jpg 1140w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Ivonne2-1000x1500.jpg 1000w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Ivonne2-535x803.jpg 535w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Ivonne2-360x540.jpg 360w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Ivonne2-270x405.jpg 270w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Ivonne2-124x186.jpg 124w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Ivonne2-55x83.jpg 55w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Ivonne2-817x1226.jpg 817w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Ivonne2-scaled.jpg 1707w\" sizes=\"auto, (max-width: 683px) 100vw, 683px\" \/><\/figure>\n<p class=\"wp-block-paragraph\">Still, she tried to continue her work as a teacher. A few years ago, she developed early-stage cataracts and had her lens replaced. Things seemed stable for a while after that, but in 2023, she began experiencing severe symptoms again. \u201cI had blisters on my eye that burst\u2014it was excruciatingly painful. I was out of commission for months.\u201d Returning to work was tough, especially when the symptoms flared up again. \u201cSometimes I feel like a ticking time bomb, because I never know when things will go wrong again.\u201d Ivonne is now being treated by a new doctor, who checks on her regularly and is considering surgery. Despite everything, she remains positive. \u201cI really love my job. Sitting at home isn\u2019t for me, so I keep cautiously getting back to work.\u201d        <\/p>\n<h2 class=\"wp-block-heading\"><strong>Chris<\/strong><\/h2>\n<p class=\"wp-block-paragraph\">Chris (51) was diagnosed with ICE syndrome in 2014, after years of vision problems. \u201cI started out with a different eye condition, but it eventually turned out that I also had ICE in both eyes. Having the condition in both eyes is very rare and therefore very confusing.\u201d Since then, he has undergone four corneal transplants and procedures to lower intraocular pressure. There is no cure for ICE syndrome, so the condition is untreatable in the long term. \u201cOne hospital says that ICE never occurs in both eyes, while another hospital says it is possible. That makes it very difficult for patients, because you get conflicting advice.\u201d    <\/p>\n<figure class=\"wp-block-image size-large is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"683\" height=\"1024\" src=\"https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Chris2-683x1024.jpg\" alt=\"\" class=\"wp-image-4352\" style=\"aspect-ratio:0.6669975186104219;width:279px;height:auto\" srcset=\"https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Chris2-683x1024.jpg 683w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Chris2-200x300.jpg 200w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Chris2-768x1152.jpg 768w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Chris2-1024x1536.jpg 1024w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Chris2-1365x2048.jpg 1365w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Chris2-1920x2880.jpg 1920w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Chris2-1140x1710.jpg 1140w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Chris2-1000x1500.jpg 1000w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Chris2-535x803.jpg 535w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Chris2-360x540.jpg 360w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Chris2-270x405.jpg 270w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Chris2-124x186.jpg 124w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Chris2-55x83.jpg 55w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Chris2-817x1226.jpg 817w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Chris2-scaled.jpg 1707w\" sizes=\"auto, (max-width: 683px) 100vw, 683px\" \/><\/figure>\n<p class=\"wp-block-paragraph\">The illness had a major impact on his life. Chris had to quit his job as a commercial pilot, something he still misses. \u201cThat was really tough mentally. But I\u2019ve also learned to live more in the moment. I used to work 80 hours a week; now I enjoy the little things.\u201d Despite his down-to-earth attitude, the uncertainty remains high. Statistically speaking, donor corneas last for shorter and shorter periods after each transplant. \u201cI realistically assume that my vision will be gone by the time I\u2019m around sixty. That sounds harsh, but it allows me to make plans.\u201d What he hopes for most is greater consistency in medical knowledge in the Netherlands. \u201cIt\u2019s concerning that within an hour\u2019s drive, you get completely different perspectives from different hospitals. Our rare condition deserves more research into its causes and treatment options.\u201d       <\/p>\n<h2 class=\"wp-block-heading\"><strong>Semra<\/strong><\/h2>\n<p class=\"wp-block-paragraph\">Semra (42) first experienced symptoms in 2022. \u201cI suddenly started seeing halos with my right eye. It didn\u2019t go away, so I went to see my primary care physician. Eventually, at the Rotterdam Eye Hospital, I was told that I have ICE syndrome.\u201d She was first prescribed eye drops, but surgery soon followed, during which a shunt and an artificial lens were implanted. \u201cMy intraocular pressure was very high\u2014over 40. I could really feel it, too. Fortunately, after the surgery, my intraocular pressure was low\u201418 at my last checkup.\u201d Still, her vision isn\u2019t as sharp as it used to be, and she often feels dizzy. Because of this, she can no longer work on a computer. \u201cI used to work 40 hours a week in front of a screen, but that\u2019s too tiring now. Through Koninklijke Visio, I\u2019m getting help to figure out what I can do. I\u2019ve since started my own fun ultrasound agency.\u201d      <\/p>\n<figure class=\"wp-block-image size-large is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"683\" height=\"1024\" src=\"https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Semra2-683x1024.jpg\" alt=\"Photo of Semra\" class=\"wp-image-4355\" style=\"aspect-ratio:0.6670025188916877;width:270px;height:auto\" srcset=\"https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Semra2-683x1024.jpg 683w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Semra2-200x300.jpg 200w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Semra2-768x1152.jpg 768w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Semra2-1024x1536.jpg 1024w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Semra2-1365x2048.jpg 1365w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Semra2-1920x2880.jpg 1920w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Semra2-1140x1710.jpg 1140w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Semra2-1000x1500.jpg 1000w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Semra2-535x803.jpg 535w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Semra2-360x540.jpg 360w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Semra2-270x405.jpg 270w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Semra2-124x186.jpg 124w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Semra2-55x83.jpg 55w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Semra2-817x1226.jpg 817w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2026\/02\/Semra2-scaled.jpg 1707w\" sizes=\"auto, (max-width: 683px) 100vw, 683px\" \/><\/figure>\n<p class=\"wp-block-paragraph\">The hardest part for Semra was accepting that she would only have vision in one eye. \u201cI was under so much stress. After the surgery, I suddenly thought: I can handle this. I\u2019ve accepted it, and that gives me peace of mind.\u201d Staying positive helps her keep going. \u201cI think about my family and my children. If I dwell on fear and sadness, I\u2019ll only make myself unhappy. Of course, I\u2019m afraid that my other eye will be affected too, but I try to let it go.\u201d Fellow patients play a big role in that. \u201cThrough hoornvlieswijzer.nl, I found the WhatsApp group with others in the same situation. The others have really supported me, especially when I was afraid of the surgery. I\u2019m very grateful for that.\u201d     <\/p>\n<h2 class=\"wp-block-heading\">Read more<\/h2>\n<p class=\"wp-block-paragraph\">Would you like to learn more about ICE or connect with others who have this syndrome? Then visit the website hoornvlieswijzer.nl <\/p>\n","protected":false},"excerpt":{"rendered":"<p>Four people with a rare eye disease found each other online. Ivonne, Chris, Kirsten, and Semra all have ICE syndrome, a corneal condition about which little is known in the Netherlands. Ivonne posted a call for others on hoornvlieswijzer.nl, and that\u2019s how a small support group was formed. They recently met for the first time in Utrecht. In this interview, they share their stories, as they want to raise awareness about the condition and make it easier for others to find the support group for help and connection. What\u2019s the connection to the OOG in OOG Association? It\u2019s Kirsten\u2014she\u2019s a member of the OOG in OOG Association. She had to have her eye removed due to symptoms caused by ICE syndrome.       <\/p>\n","protected":false},"featured_media":6258,"template":"","meta":{"_acf_changed":false,"_daextauttol_enable_tooltips":""},"library_cat":[120,118],"class_list":["post-6257","library_pt","type-library_pt","status-publish","has-post-thumbnail","hentry","library_cat-eye-disorders","library_cat-living-with-an-eye-prosthesis"],"acf":[],"_links":{"self":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/library_pt\/6257","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\/6258"}],"wp:attachment":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/media?parent=6257"}],"wp:term":[{"taxonomy":"library_cat","embeddable":true,"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/library_cat?post=6257"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}