An excerpt from JOURNEYS THROUGH DARKNESS: A BIOGRAPHY (Shared Pen, 2012) by Alina Oswald with photographs by award-winning, legally blind photographer, HIV and AIDS activist and long-term survivor, Kurt Weston

CMV Retinitis at a Glance

Flashing lights, floating spots, speckles of cotton disturbing the eye-sight, making it hazy and blurry as if you’re looking through a screen may be the first signs of an eye disease called CMV retinitis.

Retinitis is an infection of the retina, the thin layer of light-sensitive tissue lining the back of the eyeball. The function of the retina is to convert the optical image we see with our eyes into electrical impulses that are then sent through the optical nerve to the brain. Sometimes, even if the infection is cured, scars may remain on the retina. If left untreated, retinitis can lead to partial or total blindness.

Viral retinitis (caused by a virus) happens most frequent in people with weakened immune systems, like HIV/AIDS patients or cancer patients. Chemotherapy treatments can weaken immunity, making the patients prone to viral retinitis.

Three viruses are commonly responsible for viral retinitis:

-Herpes simplex virus, which causes cold sores.

-Varicella-zoster virus (HZV or Herpes Zoster Virus), which causes chickenpox.

-Cytomegalovirus retinitis, which causes total or partial blindness.

Cytomegalovirus is transmitted through bodily fluids like saliva, blood, urine, semen, and breast milk, and lives peacefully in a healthy human body, in an inactive, (dormant) state, not causing disease. Most people get exposed to CMV, especially with age, without being aware that they have been infected.

When the immune system weakens (CD4 count below 50), CMV can become active. For example, in a person living with AIDS, when the T-cell count dips below fifty (a healthy individual has approximately one thousand T cells measured per unit of blood), CMV can become active and attack different parts of the body, causing serious damage. The virus can cause CMV retinitis in the eye or CMV pneumonia in the lungs. It can also spread to the esophagus, stomach, and bowels.

In AIDS patients, CMV most commonly affects the eye, causing CMV retinitis, an infection affecting the retina. As a result, the signals sent from the eye to the brain become incomplete or inaccurate, leading to blurry vision or blind spots in the vision. 

In some cases, people with CMV retinitis do not have any symptoms of the disease, sometimes even while they’re on the verge of losing their eyesight. That’s why it is advisable for people with very low T cell counts to go to an eye specialist for regular check-ups, and special tests for CMV in the eyes. Early lesions would look like small yellow-white patches with a grainy appearance, often accompanied by bleeding.

There are three standard medications used to treat CMV retinitis: ganciclovir, foscarnet, and cidofovir. CMV medications can be administered as intravenous (ganciclovir alone or in combination with foscarnet), intravitreal (injected into the vitreal fluid of the eye), as intraocular implants (surgically implanted into the eye to gradually release the drug), and also as oral medication. Oral medication is used for maintenance or as prophylaxis, to keep the CMV in check (inactive), and thus reduce the risk of more damage to the retina; therefore, preventing more vision loss.

Note/2024: CMV-related loss of eyesight is, still, too often associated with the early years of the HIV and AIDS pandemic. But that’s not always the case. To this day, there are still individuals who present with early signs of CMV retinitis, as well as with other opportunistic infections that used to define the early days of the pandemic. Today, many of these individuals have more chances of being diagnosed early on, and given ganciclovir (still) to treat the CMV in their eyes…and, thus, have their eyesight saved for another day.