A Call to Improve Women’s Eye Health Through Research, Access, and Education

By Liz Hay, SWHR Communications Intern

Vision loss may not immediately come to mind as a women’s health issue, but women are disproportionately harmed by most major eye conditions. These diseases can be debilitating for an individual’s physical and mental health as well as their overall quality of life. Vision disorders affect women of all ages and successfully improving women’s eye health requires attention to the continuum of health across the life span and awareness of these issues on a societal level.

“What do we have to give up in order to bring better vision to all people, women and girls especially?” asked Janine Austin Clayton, MD, an ophthalmologist and director of the National Institutes of Health (NIH) Office of Research on Women’s Health. “What unquestioned assumptions, beliefs, standard operating procedures, or accepted norms must we give up in order to make greater strides to bring good eye health to women and men around the world?”

To address this question, SWHR convened a panel of experts to identify gaps in women’s vision health across five key areas: thyroid eye disease, dry eye, retinal diseases, neuro-ophthalmological disorders in pregnancy, and migraine-related eye disorders.

Thyroid Eye Disease

Thyroid eye disease (TED) is a rare autoimmune condition that causes inflammation and swelling in the muscles and tissues surrounding the eyes. TED is often linked with Graves’ disease, a debilitating thyroid condition, but people without Graves’ may still develop TED. Patient experiences vary, but the most common symptoms include dry or irritated eyes, eyelid retraction, and bulging eyes.

“Women make up 85% of thyroid eye disease patients, so any time we’re talking about TED, we’re talking about women patients in particular,” said Erin Shriver, MD, a clinical professor of ophthalmology at the University of Iowa. In addition, smokers are two times as likely to develop Graves’ disease, and patients with Graves’ disease who smoke are 7.7 times more likely to develop TED.

Thyroid problems in general are five to eight times more common in women, and research and understanding of these disorders must be improved in order to identify and prevent the underlying causes of TED. Treatment options are limited for TED, but earlier this year, the Food and Drug Administration (FDA) approved the first treatment for TED. “It will allow for earlier intervention and brings hope that severely affected patients can improve dramatically,” Shriver said.

Dry Eye Disease

Dry eye disease (DED) is a common ocular condition caused by too few or malfunctioning tears. Not only are women twice as likely to have DED as men, they are also diagnosed at earlier ages and experience more severe symptoms.

“There are sex and gender differences in DED that affect ocular structure, functioning, and health,” said Laura M. Periman, MD, Founder and Director of Dry Eye Services and Clinical Research at the Periman Eye Institute in Seattle. “The loss of testosterone — not estrogen or progesterone — that occurs during menopause is linked to increased risk of DED in older women.” Women are also more likely to use contact lenses, wear makeup, and have certain elective eye surgeries compared to men, all of which elevate risk for DED.

DED is a treatable condition, but barriers to care often prevent women from receiving treatment. “There is a huge access to care component in DED because it’s very expensive,” Periman said. “Most insurance companies won’t cover the effective treatments.” This gap will likely widen in the future as increasing computer use in modern life, particularly during pandemic-era virtual work, and worsening air quality both increase the prevalence of DED on a societal level.

Eye Health and Pregnancy

“Pregnancy is a complicated window of time in a woman’s life that can be seen as a stress-test for the rest of her life,” said Kathleen Digre, MD, a professor of neurology and ophthalmology at University of Utah School of Medicine. The unique conditions of pregnancy can exacerbate or induce certain retinal diseases in women, including diabetic retinopathy (DR), which is the fifth leading cause of blindness worldwide, with increasing prevalence among women in the U.S.

Pre-existing factors like obesity can seriously impact a pregnant woman’s chance of conditions like DR or idiopathic intracranial hypertension (IIH), an eye condition which can cause intense headaches. Regular screening and emphasis on healthy behaviors before and during pregnancy can help prevent, predict, and detect these conditions in pregnant women.

However, understanding and improving vision health for pregnant women is hindered by their exclusion from medical research. “There are virtually no drugs approved for pregnancy, including none for IIH,” Digre said. “We have to safely include pregnant women in our research.”

Migraine and Vision

Although migraine disease affects millions of Americans and is three times more common in women than in men, it is not often considered a serious threat to women’s vision health. While it is most commonly characterized by debilitating headaches, migraine is the most common condition associated with light sensitivity and can cause severe eye pain. Migraine can also cause aura, where patients see sparks, bright spots, or other disturbances in their vision. Migraine with aura is twice as common in women compared to men.

“Migraine affects visual quality of life to the same degree as Graves’ disease, optic neuritis, and other severe vision conditions, but we just don’t study the links between migraine and vision,” Digre said. “Why aren’t we paying attention to chronic migraine in women’s vision health?”

Research on visual quality of life with migraine shows us that dry eyes and photophobia contribute to this. However, people with migraine can take steps to seek treatment for their disease and improve wellness. If you suffer from migraine, SWHR’s Migraine Patient Toolkits have tips from experts to help you manage your health.

Raising Awareness and Improving Research

Across all areas of eye health, more research is needed to better understand the roles that sex and gender differences may play in disease prevalence, severity, diagnosis, and treatment.

For example, although conditions such as age-related macular degeneration, diabetic retinopathy, uncorrected refractive error, and cataract affect all genders, the burden of vision loss is far greater in women worldwide, according to recent studies by the Global Burden of Disease. More needs to be done to understand the causes, such as access to care, and to reduce disease burden, said Mary Elizabeth Hartnett, MD, a professor of ophthalmology and visual sciences at the University of Utah.

One challenge is the inherent disconnect between ophthalmology and other fields of medicine, which often impedes timely detection of vision conditions. Both health care providers and patients lack a holistic understanding of women’s vision health. Widespread awareness of warning signs and sex and gender differences in vision health could improve self-detection of potential vision concerns. Improving screening for eye diseases through modern innovations like telehealth and artificial intelligence could also help with early detection of these conditions.

Eye conditions often have many mental and physical comorbidities, particularly among senior women, which must be better considered by clinicians and researchers. For example, the physical pain and potential disfigurement with TED can cause emotional distress in patients. These psychological impacts are more pronounced among women, who bear additional societal expectations about appearance and who already disproportionately suffer from mental health conditions like depression.

These disparities can be addressed through research, but this work is stymied by the need for comprehensive data and research frameworks that address women’s vision health concerns. Research initiatives led by the National Eye Institute and other groups seek to close these data gaps, but there is a long way to go.

To improve the vision and eye health of all women in society, we must integrate data, research, and prevention strategies at the population level, not just for individuals. “We know that vision disorders impact a significant proportion of the population and we know that there are significant disparities relating to gender,” said Kira Baldonado, vice president of public health and policy at Prevent Blindness. “Vision disorders are just as common as other chronic disorders and they need to be given that same level of urgency at the population level to improve women’s vision and eye health.”

Learn more about common eye diseases in women and lifestyle choices to help reduce vision loss on the Women’s Eye Health website, produced by the National Eye Health Education Program and Women in Ophthalmology.