MacTel2 Treatment: With Easier Ways to Adapt to Vision Loss

Medication, Surgery, and Lifestyle Adjustments

Medically reviewed by Johnstone M. Kim, MDMedically reviewed by Johnstone M. Kim, MD

Macular telangiectasia type 2 (MacTel2) causes gradual vision loss in both eyes. This condition is not curable, but treatments may help slow disease progression. While MacTel2 typically doesn’t cause complete blindness, living with vision loss poses practical challenges, and it can be emotionally difficult to cope.

This article describes the treatments for MacTel2 and lifestyle recommendations for living with this type of vision loss.

<p>Hiraman / Getty Images</p>

Hiraman / Getty Images



Takeaway

MacTel2 is a rare eye disease, with a prevalence of approximately 1 out of every 5,000 to 10,000 people. This condition affects people over age 40.



MacTel2 Treatment for Vision Changes

Treatments for MacTel2 include medication, surgery, supplements, and emerging experimental therapies. It’s important to know that sometimes this condition does not require medical intervention because the vision loss often worsens very slowly. However, you and your eye doctor will need to watch closely to decide if you need to start treatment.

Treatments for MacTel2 include:

  • Injections of steroids: These injections into the eye can help reduce swelling.

  • Surgical procedures: Laser eye surgery and other procedures may be used to help seal leaking blood vessels.

  • Anti-vascular endothelial growth factors (anti-VEGF) drugs like Avastin (bevacizumab): Injections into the eye may be used when choroidal neovascular membranes (abnormal blood vessels under the retina) develop as a complication of MacTel2.

These treatments may have limited benefits or could potentially have side effects.

Related: Types of Macular Telangiactasia

Experimental Therapies

Research examining the potential benefits of other MacTel2 treatments is underway.

Some potential treatments that are being examined in research studies:

  • Anti-VEGF drugs: These treatments are injected into the eye to reduce blood vessel overgrowth.

  • Ciliary neurotrophic factor (CNTF): This treatment involves implanting material into the eye that may slow macular degeneration.

  • Fenofibrate: This medication, which is used to lower cholesterol, may help reduce the buildup of harmful fats around the macula.

  • Gene therapy: This treatment may help replace defective genes that could contribute to the development of MacTel2.

  • Serine supplement therapy: This amino acid has been found to be deficient in MacTel2.



Proliferative vs. Non-Proliferative MacTel2

There are five defined stages of MacTel2. Stages 1 through 4 involve vision loss due to changes in the blood vessels around the macula and thickening of the macula. Stage 5, which is an advanced stage, is described as proliferative MacTel2 because the blood vessels leak, causing significant eye damage.



MacTel2 Adaptations and Adjustments

After diagnosis of MacTel2 or if you have vision loss for any reason, it’s crucial that you discuss your prognosis with your eye doctor. You need to know how often to schedule routine eye examinations and follow-up visits.

You also should learn which symptoms are concerning, and when you should call for an additional appointment beyond your scheduled follow-ups.

The friends and family members who spend a lot of time with you should be aware of your limitations. It would be beneficial for you to discuss what type of assistance they could offer you when you are together. For example, you may ask them to read the menu if you are out at a restaurant together.

You may need to make adjustments to your day-to-day life—especially when it becomes unsafe for you to continue driving.

Some adaptations you might consider are:

  • Prescription corrective vision lenses

  • Vision rehabilitation

  • Occupational therapy to learn to manage certain tasks despite vision limitations

  • Using a cane or walker to get around safety

  • Learning to use Braille (a system of touch reading and writing)

Learn More: A Caregiver's Guide to Coping With Vision Loss

MacTel Community and Specialist Support

If you’ve been diagnosed with MacTel2 and are coping with vision loss due to the condition, it’s crucial that you seek practical support and guidance from your eye doctor and from other groups that may have updated information about this condition.

Ask your eye doctor if they recommend that you see a specialist in MacTel2 and similar conditions, or if there are clinical trials that you may qualify for.

You may also wish to contact or join organizations that can provide you with the latest updates, treatments, and guidance on the condition, including information on potential research trials.

Some organizations that may consider joining include:

Taking Care of Your Mental Health With MacTel2

Living with vision loss can lead to depression, anxiety, anger, isolation, or a combination of these conditions. It’s important for you to know that you are not alone and that many people who experience vision loss feel similar emotions.

It may be benefit you to seek help from others. For a professional perspective, talk with a therapist who will listen to your concerns, acknowledge what you are experiencing, and provide advice and guidance.

Also consider joining a support group for people living with vision loss. In this type of community, you can learn from others' experiences as well as share your own feelings and concerns with people who understand what you are going through. You may also find it beneficial to give support and advice to others as you become an active part of the support community.

Learn More: 6 Ways to Manage Stress With Vision Loss

MacTel2 Clinical Trial Enrollment

Research studies aim to determine the causes of MacTel2 and to evaluate potential treatments. The best way to consider these options is to ask your eye doctor to point you to resources they trust.

You might qualify for research studies that look for causes and risk factors. Such trials often involve undergoing diagnostic tests, such as genetic blood tests, that researchers can use to identify inheritance patterns or genes that could predispose you to MacTel2.

Some clinical trials involve gaining access to potential therapies that may be helpful in improving vision or slowing down vision loss with MacTel2. Note, however, that by participating in a study, you may or may not benefit from the treatment, and you could possibly be exposed to side effects.

You, your eye doctor, and your family can decide together whether certain studies would be a good fit for you.

If you want to pursue enrolling in a research study, your eye doctor‘s office can put you in touch with the research center. You will be assessed to see if you qualify based on your symptoms, previous treatments, and the stage of your condition.

If you qualify, you will be provided with information about the study so that you can decide whether you want to proceed.

Summary

Living with vision loss leads to practical challenges, and it is emotionally difficult. It’s important that you get the right diagnosis and treatment for your condition, follow recommendations for managing day-to-day limitations, and reach out for support to help you cope with the psychological consequences of vision loss.

Several treatments are available for MacTel2, and they can help prevent or slow vision loss. The most common therapies are injections to reduce swelling around the macula and eye surgery to repair damage. Another way to get treatment is to apply for and be accepted into clinical studies.

Read Next: Disability Accomodations for Vision Loss

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