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Layla’s thyroid eye disease (TED) symptoms started when she was 12, but she had to wait 17 years for her diagnosis. Unfortunately, this chronic condition has flared up many times since then. During these flare-ups, just looking upwards or being in the sun has been painful, so even everyday activities like driving or watching her kids play soccer have been a torment. This is Layla’s account of living with a condition that seems to always be in the background, ready to flare up again

Layla Lohmann’s troubles began in 1998 when she was about 12 years old. She noticed she was unexpectedly becoming thinner—in fact, she was losing weight so rapidly that her mother started to question whether her daughter was anorexic, despite her “eating everything” at the time.

The pair thought it best to consult a doctor for answers, and after some blood tests Layla discovered she had an overactive thyroid, also known as hyperthyroidism, and was diagnosed with Graves’ disease with exophthalmos (bulging eyeballs). Soon after the diagnosis, her thyroid issues became visible. “Being Iranian-American, I already had pronounced features and big eyes, but at 12 years old, my eyes were excessively protruding. I was called ‘bug eyes’ and regularly made fun of.”

Two years later, in 2000, the medication Layla had been taking to suppress the amount of thyroid hormone she was producing was no longer working well for her, and she began to also suffer from bruising all over her body.

To help manage her symptoms, Layla was given just two options—radiation or surgery. “My mom and I weighed the pros and cons, and one of the cons of the radiation was that it would have made my eyes look worse. Being a teenage girl, I had to make an aesthetic decision, so I had a thyroidectomy. Almost instantly, when they removed my thyroid, I became stable. My eyes returned to normal, and I just considered the problem to be over.”

In the years that followed her thyroid surgery, Layla consistently experienced severe symptoms of allergy, including dry eyes, redness, pain and asthma. “People would tell me, “You’re allergic to the world. You should live in a bubble.” It was just my normal to stay inside and not enjoy going outside; it was hard to explain my pain at the time—I couldn’t properly express that the sun would hurt my eyes.”

In 2009, when Layla was in her second year of training to be a dentist, her eye problems finally came to a head. It was only when she started having difficulty reading the classroom board that she began to fear for her sight. “I thought to myself, ‘Gosh, am I going blind?’ I was so scared but also initially too proud to raise my concerns.”

Eventually Layla did speak with an ophthalmologist, a type of eye care specialist, who thought she had severely dry eyes from constant watering and recommended a procedure to plug her tear ducts.

Looking back, Layla remembers thinking her ever-present pain and headaches were normal. “I was about a 9 out of 10 on the pain spectrum. I’d have to wear sunglasses to watch TV. My eyes wouldn’t close all the way. Even when I was sleeping you could see the whites of my eyes, even after I had my tear ducts plugged. Being a happy person, I had convinced myself that my suffering was just a normal part of growing older.”

In 2011, still no closer to a diagnosis and still believing that her allergies were the root cause of her suffering, Layla found that her eye symptoms were starting to interfere with her work as a newly qualified dentist. Pressure, redness and pain surrounded her eyes, and the dryness felt like sandpaper and was very painful. “My dry eyes were making my work complicated. I was once in the middle of a procedure and one of my contact lenses dropped out.” 

In a desperate attempt to improve her quality of life, Layla had laser surgery, which did—temporarily—ease her symptoms. “I did get the surgery, which I’m not sure I should have, but it did help me see better.”

In 2014, after deciding it was the right time to start a family with her husband, David, Layla became pregnant. “About three months into the pregnancy, I experienced persistent pain, with swelling around my eyes, headaches and double vision.”

Overcome with pain, it took Layla some time to find “a doctor who was interested in more than just prescribing steroids”. And after much hard work to manage her symptoms, she was finally given a concrete diagnosis of thyroid eye disease (TED). “My doctor said, ‘Layla, you have an acute phase of thyroid eye disease’ and I just laughed in his face—I was so shocked that I had been living undiagnosed with TED since I was 12 years old.”

With months of pregnancy still in front of her, Layla was battling with constant pain and came close to becoming bedridden. “I was four months pregnant, and the pain was progressively getting worse.”

Towards the end, she pleaded to have her baby delivered early. “My head and eyes were killing me! I told the doctors that I would not survive any more weeks. And, finally, they listened to me.” At 35 weeks, her son, Lucas, was born, and her TED symptoms improved almost instantly. “I felt 75% better. My pain, eye swelling and double vision all eased. It was incredible.”

After such a traumatic pregnancy, Layla wondered whether having another child would be sensible, but her doctor reassured her a recurrence of her acute TED symptoms was extremely unlikely. David and Layla tried again for a baby, but Layla was beset by a string of complications over the years that followed, including a fallopian tube rupture and an ectopic pregnancy, forcing the couple to reassess their hopes of having more children.

Layla continued to live her life, carefully managing her symptoms, until suddenly and quite unexpectedly, history repeated itself. Four years after Lucas was born, she started to experience the same debilitating eye problems as before. “I knew I was pregnant because my thyroid eye disease had reactivated: I had pain, discomfort and pressure around my eyes. I knew TED had reactivated”. Her doctors could see the change, she says, but they wanted to continue to manage her symptoms and did not want to have an early delivery.   Finally, following Layla’s persistent self-advocacy, her care team agreed that an early delivery was the right thing to do as her health continued to deteriorate during her third trimester.

After Nora was safely delivered at 36-weeks, Layla’s symptoms were “about 75% better—the double vision, the pain, the eye swelling—everything just got better.” Thankfully, Nora was a healthy baby, but her mother had much to deal with after her birth. Not only did she need an emergency hysterectomy about six months later, because of endometriosis, but she also needed to manage her continuing TED symptoms. And then the pandemic struck.

“I was managing my health around the pandemic, as everybody was, but still providing care for patients—you can’t let your oral disease get bad just because the world is ending!”

Amid the extraordinary demands of the time, Layla’s doctor told her that a new medical therapy might be available to her and, having weighed up the risks and benefits together, Layla decided to begin infusions. In her view, the risks were more acceptable than the risk of losing her sight through surgical interventions. Soon afterwards, however, the production of some medicines was stopped so that the COVID vaccine could be produced in sufficient quantities. Layla’s battle for access to a full course of treatment had begun—first with the government and then, when manufacturing resumed, with her insurance company.

She found the treatment tough and describes the side effects as a “beat down”. But at the end of it, she felt the improvements to her health made it all worthwhile. “I felt so good: enjoying my family, not putting everything on them, going to my kid’s soccer games without hating going because of pain from my eye disease—and feeling ‘mom guilt’ at hating going.”

The relief of her TED symptoms opened a new chapter in Layla’s life, and with the help of therapy, she began to heal from the trauma of her “long and arduous” health journey. “My therapist helped me understand myself, which helped me be a better mom, wife, dentist, friend and sister.”

When Layla’s TED symptoms once again flared a few months later, at the start of 2022, she asked her doctor about follow-up treatment. Unfortunately, accessing that became another battle with her insurers, because they believed they had met their commitment to her. Layla’s fight for further infusions took up countless hours of her time and brought untold stress, but after months of vociferous campaigning, she was finally granted access.

As Layla’s journey with TED continues, she advocates for others in her community through her work with organisations such as TED Community Organization and Prevent Blindness. She passionately believes that people living with TED should be able to share in decision-making about their treatment options, through access to the most up-to-date information possible. Then they can decide with their healthcare team what is best for them, balancing the relative risks and benefits as they see them—rather than just how their doctor sees them.

As a healthcare professional, she knows that getting to the information about treatments is much easier for her than for others, but she wants the barriers to come down so that all affected by TED have a stronger voice within discussions about their own care. Not least, say, a little 12-year-old girl with TED, who may not even know that she is in pain. Or an adult with TED who does not know that medical options as well as surgical therapies may be available to them.

“I always tell people: an educated patient is a smart patient. Smart patients make informed decisions. And informed decisions can be to have no treatment, minimally invasive treatment, aggressive treatment. But all of us—healthcare providers and the patient—need to have a decision-making role.”

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This article has been made possible with support from Viridian Therapeutics. Viridian had no editorial or copyright control over this content. Views are solely those of the contributors.