Living with Coats Disease: My Journey

Introduction

This is a deeply personal post, and I don’t typically share much of my private life online. However, Coats Disease is rare and severe, and sharing my experience could help raise awareness, possibly encouraging more research towards better treatments and, eventually, a cure. Here is my story of living with Coats Disease.

How It All Began

Growing up, I never had any issues with my eyes—no glasses, no complications, nothing. My vision was always clear. But in late 2020, things started to change. I began to notice a small blurry spot in the center of my vision in my right eye. At first, it was barely noticeable—something I could ignore. It was only when I covered my left eye that the spot became more apparent. Still, our brains are incredibly adaptive, and mine adjusted quickly enough that I wasn’t too bothered. I was busy with my life—studies, work, and the usual rush—and assumed it was nothing serious.

Weeks passed, and that blurry spot slowly grew. By early 2021, it was impossible to ignore. I went for what I thought would be a routine eye checkup, expecting to be told that I might need glasses. But during the examination, the doctor’s concern was immediate and palpable. When I tried looking through the machine with only my right eye, I realized that I could hardly see anything. The doctor advised me to see a specialist as soon as possible. That was just the beginning.

After going to the specialist it was kind of a exploratory journey for both me and the doctors. I spent hours in that eye clinic. I had to explain my symptoms repeatedly, go through test after test, and move from one room to the next. Eventually, the two most experienced doctors at the clinic gave me a diagnosis: Coats Disease. They ran further tests, like an angiogram and an OCT scan, to get a clearer picture of my retina’s condition.

The news was crushing. I needed immediate treatment to prevent further damage, but they told me I would never fully regain my vision in that eye. The goal was to stop the disease from worsening and recover whatever I could. There were no guarantees, no promises—only uncertainty. My family was devastated, and my friends were in shock. Everything seemed to pause as I tried to wrap my head around what was happening.

Coping with the Diagnosis

It was a shock for me. Everything that has been going on in my life, kind of came to a standstill. I love nature, traveling, photography—I love seeing things, exploring the world in my own way. When the idea started sinking in that I might lose vision in one eye and that I might not be able to see the world the way I always had, it was overwhelming. I felt incredibly distressed and helpless at the beginning. The thought of losing the ability to do what I loved the most weighed heavily on me.

Eventually, I learned to live with it and came to accept my fate. Nietzsche’s concept of “amor fati”—the love of one’s fate—helped me a lot during this time. Each treatment became just one step closer to getting my condition under control, and I approached it almost like a routine. I was determined not to lose the vision I had left. Instead of focusing on what I couldn’t regain, I focused on saving what could still be saved.

Understanding Coats Disease

Coats Disease is a rare eye condition where the blood vessels in the retina develop abnormally. These vessels become twisted, dilated, and eventually start leaking fluid. In a healthy eye, these vessels supply nutrients to keep the retina functioning well. But in Coats Disease, the leaking vessels cause fluid buildup in the retina, leading to swelling and, if untreated, potential retinal detachment. This leakage usually begins affecting central vision, and it often progresses if not addressed. Almost always, it affects just one eye—in my case, my right eye.

Most people diagnosed with Coats Disease are children or teenagers, and approximately 69% of the cases are male. The average age for diagnosis is between 8 and 16 years, though it can occur much earlier. It’s not thought to be hereditary, and it affects fewer than 200,000 people in the United States, making it a very rare disease. My doctors were quite surprised that my case appeared so late, after 25 years, making me something of an outlier within an already rare condition. If caught early, treatment can help preserve some vision, but without intervention, it can lead to complete blindness in the affected eye. In severe cases, removing the eye may be necessary.

The cause of Coats Disease remains largely unknown (this is medically known as idiopathic). Some research suggests a potential link to genetic mutations (I need to call X-Men soon 😉), but nothing is confirmed. This uncertainty adds another layer of frustration—it’s not something you can prevent or anticipate.

Treatment: Cryotherapy and Laser Therapy

Cryotherapy

Cryotherapy was one of the primary treatments I underwent, and each session was an exercise in resilience. It started with a few doses of anesthetic eye drops to numb the area. There was an option for full-body anesthesia, but I decided to go with local anesthesia. After the drops, there was an injection given at the corner of my eye to further numb the area. Lying there with my head and eye held in place by apparatus, trying not to think about the needle—it was nerve-wracking, to say the least.

The preparation took about 40 minutes to an hour, including attaching a heart rate sensor to my finger and waiting for the anesthesia to fully take effect. When the doctor finally leaned in to begin, my vision was already so blurry from the medication that I couldn’t see much with my right eye. However, I could catch glimpses of it all with my left eye, which made the entire experience unsettling. Seeing needles moving towards my eye was terrifying.

The cryotherapy itself was a slow process, and I had to stay overnight at the hospital for monitoring afterward. Once the anesthesia wore off, I could feel the pain and discomfort—it was intense and made it very hard to sleep. I had to keep my eyes closed because even trying to open them hurt. After each session, I wore a bandage over my operated eye for the rest of the day, and the doctor would remove it the next morning to check if everything was okay. Recovery also meant continuing with medicated eye drops for a couple of weeks to prevent inflammation or irritation.

Laser Therapy

Laser therapy is another treatment I’ve undergone numerous times, and much like cryotherapy, it’s not something you get used to. It starts with eye drops to dilate my pupils, followed by more drops to prevent inflammation. Then, the doctor uses a special lens coated with gel, placing it directly on my eyeball (yes! something pressed hard to the eyeball), while keeping my eyelids open with an apparatus.

The doctor directs the laser shots through the lens and instructs me to look in different directions. Keeping my eye steady under a bright, intense laser beam is incredibly challenging. Every instinct tells you to look away or close your eyes, but you can’t. The laser targets the leaking vessels in the retina, and it hurts—a deep, sharp pain that is hard to describe. You might think that how can lasers hurt, it’s just light. But they do. Because their job is to destroy the blocks or exudates in the retina and when they hit those places, it hurts a lot. It’s kinda like working out. If your muscles are hurting, it’s working. As long as the laser can hit the target areas cleanly, it’s gonna hurt like hell because it’s actually destroying those blocked areas.

It’s very challenging for the doctor to keep hitting the spots consistently because like I said, it’s very challenging for me keep my eyeball steady. I imagine it almost feels like a video game to the doctor. Constantly moving targets, weak spots he needs to shoot with laser guns, what more can you ask for from a workplace 😉. Jokes apart, after more than ten laser sessions and couple of thousand shots, I still couldn’t get used to the discomfort nor the pain and I still hate it.

Ongoing Monitoring and Checkups

Living with Coats Disease doesn’t end with the treatments. I need to continue having regular checkups every couple of months to monitor for any new activity in the retina. These checkups are crucial because if the doctors find any new leaks or problematic changes, I might need to undergo additional laser treatments to address them before they cause further damage.

The Role of My Support System

The diagnosis and treatment all began during the COVID-19 pandemic, which meant that my support system was limited. I lived in a shared apartment with my friend, while my family was back in Bangladesh. Because of pandemic-related flight restrictions, they couldn’t travel to Germany to see me or provide physical support. They did their best to provide mental support from afar, but it wasn’t the same.

My biggest support during this time was my friend and flatmate. Without him, that period would have been unbearable. He couldn’t accompany me to the hospital or my treatment sessions because of pandemic regulations, but at home, he was always there for me. On the days when I had operations or laser sessions, and the days after when I was in terrible pain or felt irritated, he would prepare food and help with anything I couldn’t manage. During that time, we also bought guitars and started learning together. Jamming sessions, binge-watching movies and shows, or playing FIFA were our escapes. Those activities helped me stay sane during one of the most difficult stages of my life.

Daily Life with Coats Disease

Thankfully, not much changed in terms of my daily activities. My right eye isn’t completely blind—I have some blurry spots where the exudates spread and created scarring, but I can still see with that eye. With both eyes open, I can perform almost any task I used to do before. I asked the doctors if I needed spectacles or if I needed to change any lifestyle habits, but they assured me that the issue was in the retina, and external factors like glasses wouldn’t make a difference.

So, I continue to do everything I did before. My work, studies, and hobbies are still an important part of my life, and I have adapted to my current level of vision.

Finding Strength in Small Victories

Each laser session was a huge challenge, and completing each one felt like an achievement. After a few sessions, hearing the doctors say that my retina was stable and there were no more active regions always felt like a win. I began to appreciate whatever vision I had left, realizing how fragile life can be. Millions of people are completely blind from birth or lose their vision due to accidents, and I felt lucky that I could still see and continue my daily activities.

After the initial shock, I shifted my perspective. I started feeling grateful for the health I still had, for all the organs in my body that were working well. I learned to appreciate life more deeply. Even small moments, like the simple act of seeing, became precious, and it helped me face each day with a renewed sense of purpose.

“What does not kill me makes me stronger” – Friedrich Nietzsche

Conclusion

Sharing my story wasn’t an easy decision, but Coats Disease is so rare that awareness is essential. The more people who know about it, the better the chances of early detection in others, and the more likely we are to see research dedicated to finding better treatments or even a cure. If my experience helps even one person understand Coats Disease or encourages someone to get an eye checkup sooner, then sharing it is worth it.

I am grateful for the vision I still have and for the support from my family and friends. This journey hasn’t been easy, but I am learning to live with it one day at a time. Coats Disease is just one part of my story—a challenging part, no doubt—but it doesn’t define my entire life.