Macular telangiectasia (MacTel)

Macular telangiectasia (MacTel) is a rare retinal disease that affects the macula. The macula is responsible for central and color vision. Obtaining an accurate diagnosis of MacTel is not always easy. This rare disease can be mistaken for more common ones, including age-related macular degeneration (AMD) and diabetic retinopathy. Because of this, the condition could actually be more common than we think.

Like these more common macular diseases, MacTel does not cause total vision loss but can affect central vision and tasks such as reading or seeing faces. A correct diagnosis is important for people to receive appropriate care and support.

On this page:

MacTel type 1
MacTel type 2
Research
Potential treatment

Macular telangiectasia type 1

MacTel type 1 is caused by blood vessels dilating and getting bigger. This leads to small aneurysms, where blood vessels swell and bulge. With MacTel type 1, fluid leaks in the macula and leads to macular oedema.

MacTel type 1 usually only affects one eye, compared with MacTel type 2 which often affects both eyes. It is thought MacTel type 1 could be related to Coats disease, a condition largely affecting males which can cause vision loss due to aneurysms usually only in one eye.

Macular telangiectasia type 2

MacTel type 2 is a disease of the retina, the light-sensing tissue at the back of the eye. MacTel leads to a gradual deterioration of central vision, which becomes noticeable to people around 50-60 years of age.

In MacTel type 2, the blood vessels in the macula become dilated and leak, causing central vision loss. The reason why these blood vessels dilate is unknown. The condition can run in families, so there could be a genetic link, although no genes have been found to be responsible. With MacTel type 2, both eyes are affected; however, they may progress at different rates, or it might be more noticeable in one eye compared to the other.

Research

As laser treatment and anti-VEGF injections are usually ineffective in treating MacTel, there is ongoing research into the condition and possible treatments.

The Lowy Medical Research Institute (LMRI) is a non-profit research organisation dedicated to the study of MacTel and is a resource for MacTel patients. LMRI sponsors clinical and laboratory research, including the MacTel Project, a natural history study and registry of MacTel patients. More than 60 centers around the world participate in the MacTel Project, making the search for information a global effort. By enrolling in the MacTel Project Registry, patients help advance MacTel research and may have the chance to participate in clinical research.

Potential treatment

A therapy called NT-501 has undergone clinical trials at multiple centers in the United States, Europe, and Australia. This therapy delivers a protein called ciliary neurotrophic factor (CNTF) to the retina. Currently, this therapy has not been approved in the UK.

If you think you or someone you know may have MacTel, consult your local eye specialist. They can consider a diagnosis and refer to a MacTel registry center.

For more information on MacTel, see the LMRI website.

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