Vision - DM1


  • Major and clinically relevant eye manifestations in DM1 can include the following: cataracts, eyelid ptosis and incomplete eyelid closure, eye movement abnormalities, retinal changes and low intraocular pressure.

  • Visual impairments with DM1 are most often caused by cataracts. Cataracts in DM1 may progress faster than usual cataracts and may present with early-onset cataracts. Cataracts before the age of 55 or a family history of premature cataracts suggest a diagnosis of DM1 or DM2 in individuals with muscle symptoms.

  • Glare and blurriness of vision develop as lens opacities progress to stellate (starlike) cataracts and eventually to mature cataracts, which may be indistinguishable from more common types of cataracts.


  • Symptoms of cataracts and other eye manifestations in DM1 (see above).


  • Discuss the following tests with your doctor:

    • DM1 ocular manifestations via a slit-lamp examination as part of an annual eye exam.

    • Eyelid ptosis; if ptosis becomes severe and interferes with vision, intervention, such as eyelid “crutches” that can be inserted into glasses, may be warranted. Try crutches as a remedy for ptosis before eyelid surgery is considered, due to anesthesia risks and concomitant eye closure weakness.


  • Surgery to remove cataracts, but local anesthesia is preferred so that complications associated with general anesthesia can be avoided.

  • Refer to:

    • Surgical ophthalmologist when cataracts interfere with the ability to meet the needs of daily living and surgical removal of the opaque lens with intraocular lens implantation is indicated. Ensure anesthesia risks and side effects are clear.

    • Ophthalmologist for regular follow-up re: weakness of eyelid closure. Ophthalmic lubricants for dry eye can be considered.