There are a variety of signs of TSC that can involve the eyes. About 50% of people with TSC have some signs of TSC in their eyes. Loss of vision is NOT common in TSC.
Terms used by health professionals for things to do with the eyes are ophthalmic and ocular. An ophthalmologist is a medical doctor who specialises in the eyes and vision. The retina is the layer of the eye that converts light into electrical signals that are transmitted to the brain via the optic nerve.
Signs and Symptoms
There are many different signs of TSC that can occur in and around the eyes. Many of these do not cause vision problems, but can be helpful when trying to diagnose TSC.
Even for a specialist doctor, it can be very difficult to tell if a particular abnormality in the eyes is caused by TSC or some other cause.
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Retinal harmartomas caused by TSC look the same as retinal harmatomas caused by neurofibromatosis.
Retinal harmartomas are usually present at birth and usually do not grow or change over time. They rarely cause loss of vision and only cases which have associated complications (like bleeding) will require treatment.
These are benign lesions like retinal harmartomas, and involve the optic nerve.
These look like a “punched out” section of the retina. These lesions may be suggestive of a diagnosis of TSC, but are not conclusive in and of themselves.
In rare cases, facial angiofibromas can grow on the eyelids and may impact vision. For more information on treatment of angiofibromas, see information on skin signs of TSC
In some people with TSC, severe seizures or brain lesions can cause the brain to have difficulty processing the signals it receives from the eyes. This is referred to as cortical visual impairment (CVI).
Some loss of vision can be a side effect of surgery for epilepsy that cannot be controlled with medication. Usually this will be a visual field loss affecting both eyes. This is a reduction in the total area in which objects can be seen in the right or left side (peripheral) vision, while you focus your eyes on a central point. The size and pattern of the visual field loss depends on the location and extent of surgery performed.
One particular anti-epilepsy medication, vigabatrin, can cause visual field loss (tunnel vision) in some people if they take the medication for long enough. This medicine is sold under the brand name Sabril. It can be an effective medicine for controlling infantile spasms and partial complex seizures in TSC.
A neurologist should discuss these potential side effects when advising on treatment options for epilepsy. Read more on this issue here.
For more information, also see our page on Epilepsy in TSC.
Refractive errors are when the eye cannot focus the light coming into the eye properly. Types include near-sightedness, far-sightedness and astigmatism. Treatment can be with glasses, contac or even laser surgery. These problems seem to occur in people with TSC just as commonly as they do in the general population.
Strabismus refers to a misalignment of the eyes. It is an uncommon sign of TSC and may or may not affect vision. Treatment such as patching and glasses is usually recommended for the best outcome.
Surveillance & Treatment
Surveillance is important because it can lead to early detection and treatment. Each person with TSC should have an individual management plan developed with their medical team that uses these guidelines as a starting point.
- A complete eye exam should occur at diagnosis.
If any of the problems associated with signs of TSC in the eyes are found, treatment will be tailored to the individual.
Help us provide high quality TSC information
We rely on the generosity of donors and fundraisers to publish these information pages and keep them up to date. Please support our work if you can so we can continue to provide life changing information and support to families like Harrison’s. Donate now.

Last updated: 15 November 2022
Reviewed by: Dr Parth Shah, Clinical Professor, Clinical Lecturer, Discipline of Clinical Ophthalmology, University of Sydney and Visiting Medical Officer, Sydney Children’s Hospital Randwick
References:
- Kwiatkowski D.J., Whittemore V.H. & Thiele E.A. (2010) Tuberous Sclerosis Complex: Genes, Clinical Features, and Therapeutics. Weinheim: Wiley-Blackwell
- Eye Involvement in TSC, Tuberous Sclerosis Alliance, viewed 2nd May 2012, https://tsalliance.org/pages.aspx?content=587.
- The UK guidelines for management and surveillance of Tuberous Sclerosis Complex, QJM: An International Journal of Medicine, Volume 112, Issue 3, March 2019, Pages 171–182, https://doi.org/10.1093/qjmed/hcy215