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Hear stories from people living with GA*

Watch the following videos to hear about other people's experiences with GA and starting on SYFOVRE.

Hear Sheli talk about how her GA diagnosis has affected her and what steps she has taken to help manage challenges and stay positive.

ViewHide transcript   

Sheli Voice-over:

I'm Sheli, and I'm from Western Nebraska. I'm a registered nurse, certified in psychiatric nursing. I was super blessed to be able to work in mental health settings for my entire nursing career. Unfortunately, I'm not able to work any longer due to the progression of my geographic atrophy. Reading has just become too difficult, and really, any task that required fine focus became almost impossible.

I was initially diagnosed with dry age-related macular degeneration at a routine optometrist appointment in 2014. I had no concerns going into that appointment.

The first time I realized that my eyesight was really deteriorating, I was applying makeup. I looked in the mirror with one eye closed, and I saw a very distorted blank space where my face should be.

I didn't hear about geographic atrophy until 2018, when I was officially diagnosed by a retina specialist. I was really fortunate and blessed to find a retina specialist who was very proactive in pursuing options with and for me.

He acknowledged my concerns. I remember tearing up a little bit when he said, Sheli, what's happening to you is terrible. It was just so validating. We all deserve a provider who sees us and really understands what we're dealing with. There are lots of little things that people wouldn't even think about that are hard.

I can't see tags on grocery shelves. The settings on the stove are difficult, even elevator buttons. I often can't recognize faces, which is really frustrating. Going from light to dark, or vice versa, is also really challenging. Often, it feels like I just can't get enough light to see things. I've made some practical changes to deal with stuff like this.

I added red dots to my stove so I know which controls to use, so I don't broil rather than bake another Thanksgiving dinner. I've got magnifiers with lights strategically located around the house, and I've had lights installed that can be set to a brighter daylight setting. GA is a disease that people can't see from the outside.

We navigate pretty well. We look healthy. But it is so important that people closest to us understand the kinds of challenges we're having and what our future holds. My faith plays a huge part in my being able to live in a space where I don't obsess about the future. I have a deep faith that God knows and holds my future and will sustain me through this and maybe even use it in my life to encourage and support others.

My retina specialist kept me up to speed on what was happening with the approval of SYFOVRE by the FDA. As soon as it was approved and available, he let me know and I was first in line. He reviewed the risks and benefits with me, and we decided that SYFOVRE was a good fit for me. I received my first treatment in March of 2023.

Starting SYFOVRE was an easy choice for me. I had been searching for 10 years for something that could give me hope. SYFOVRE seemed like the first prospect that demonstrated potential to slow down the disease progression. My doctor and I spent some time discussing my treatment plan. He recommended SYFOVRE injections in both eyes every 28 days.

When asked how I felt after the first injection, I responded with “relieved and grateful”. I was relieved that I wasn't traumatized. I won't lie, I found the whole needle in the eye thing a little bit disconcerting. But I was so grateful that I was actually doing something. After the first injection, the doctor reminded me what things to watch for, including possible side effects, and said to call with any questions or concerns.

After years of not having any good options, I am happy to finally be doing something. When my retina specialist shows me my scans, I do feel like it's slowing my disease progression. And that gives me hope. I believe that we have to stay positive. We have to advocate for ourselves. It's okay to be afraid and to say so, but we can choose not to live in fear.

We can choose to take care of ourselves by controlling what we can and adapting to the rest.

Announcer Voice-over:

What is SYFOVRE?

SYFOVRE (pegcetacoplan injection) is a prescription eye injection, used to treat geographic atrophy (GA), the dry advanced form of age-related macular degeneration (AMD).

IMPORTANT SAFETY INFORMATION

Who should NOT receive SYFOVRE?

Do not receive SYFOVRE if you have an infection, or active swelling in or around your eye that may include pain and redness

SYFOVRE can cause serious side effects:

  • Eye infection (endophthalmitis) or separation of layers of the retina (retinal detachment)
    • Call your healthcare provider right away if you have eye redness, light sensitivity, eye pain, or any change in vision including blurred, wavy/distorted vision, small specks floating in your vision, or flashing lights
  • Severe inflammation of vessels in the retina which may result in severe vision loss. Call your healthcare provider right away if you have eye redness, light sensitivity, eye pain, or any change in vision including blurred, wavy/distorted vision, or flashing lights
  • Risk of developing wet AMD. You should be monitored for signs of wet AMD and you should report if you have any change in vision including blurred, wavy/distorted vision, black spots, or loss of central vision to your healthcare provider
  • Episodes of eye inflammation. You should report any symptoms including eye redness, light sensitivity, eye pain, small specks floating in your vision, or any changes in vision to your healthcare provider
  • Increase in eye pressure within minutes of the injection. Your healthcare provider will monitor this after each injection

Before receiving SYFOVRE:

  • Tell your healthcare provider if any of the following applies to you:
    • If you have a history of seeing flashes of light or small specks floating in your vision and notice a sudden increase of size and number of these specks
    • If you have high pressure in the eye or glaucoma
  • Tell your healthcare provider about all of your medical conditions, including
    • If you are, or think you are pregnant, breastfeeding, or are planning to have a baby, ask your doctor for advice before taking this medicine
  • Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements

What should I avoid while receiving SYFOVRE?

  • After an injection or an eye exam, your eyesight may temporarily be impaired. Do not drive or use machinery until your vision recovers

What are the most common side effects of SYFOVRE?

  • Eye discomfort
  • Wet age-related macular degeneration
  • Small specks floating in vision
  • Blood in the white of the eye

These are not all the possible side effects of SYFOVRE. Tell your healthcare provider about any side effect that bothers you or does not go away.

Call your healthcare provider for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

Please see the SYFOVRE full Prescribing Information for more information.

Learn how Rob overcame his fear of eye injections using his injection day routine, including how he prepares for his appointments and what he does afterward.

ViewHide transcript   

Rob Voice-over:

My name is Rob. I live in Chicago area. I'm a widower, retired, and prior to my retirement, I worked in the information technology industry with the last 10 years focusing on data communications.

I first noticed something was off with my vision while visiting my mom in 2013. I came home from my mom's, made an appointment with my ophthalmologist.

I went in, he took the pictures of the eye. He did all sorts of vision tests and said I had dry age-related macular degeneration, which most of us know of as AMD. So as my symptoms progressed in 2019, my ophthalmologist showed me the pictures and confirmed that I had geographic atrophy, or, or GA. Prior to that, I had never even heard of the term before.

I belong to a AMD/GA support group. And in February of 2023, they read the press release from Apellis that announced FDA approval for SYFOVRE. It was the first ever treatment that had shown potential to slow down the progression of GA.

So, I talked to my ophthalmologist and shared my fears about getting the injections. At the same time, I shared those fears with my support group. And a couple of the women in my support group just about screamed at me, If I can do it, you can do it.

So, under all this was my self-imposed sense of, I've got to do something. So my doctor and I discussed the potential risks, benefits, and side effects, and ultimately decided that this was a good option for me.

So, in 2023, I started my first SYFOVRE treatments. I don't think I really overcame my fear until I actually sat down in the chair for the first time. And then I realized, I crossed that bridge. And the ladies in the support group were right. I can do it. And did it. And I'm really glad that I finally overcame that fear.

The fear of the injection is now gone. I've actually grown accustomed to it. And in fact, I have my next injection a couple weeks from now. And that's fine. I have my own routine for that day. This is my experience. Yours may be different.

Before my appointment, I like to thoroughly wash my face to make sure the area is as clean as possible before I leave my house.

My appointments are 10:30 on a Friday. I do that because Fridays are not golf days. I call an Uber, usually an hour before my appointment time because I never really know when an Uber is going to show up.

My appointment starts like a standard eye test. Then they do a pressure test, after which they dilate the eyes so that pictures can be taken.

After the pictures, I see the doctor. The doctor will typically, and not always, do the bright light test where he looks deep into the eyes and takes his measurements. So after that, the nurse comes in and applies a disinfectant. The doctor's explained to me that that really helps minimize the chance of an infection. After the disinfectant, she applies a numbing solution so I don't feel anything.

The doctor comes in and uses a device to hold open the eye to do the injection. I feel just a little bit of pressure on that part of the eye. This is how it goes for me. Talk to your doctor about their process for administering SYFOVRE.

I call an Uber to get home. Once I get home, I don't feel like doing anything because my eyes have been dilated and I still have to have the numbing solution kind of wear off. So I don't feel like doing anything. I just lay down and take a nap. Now I can imagine other people might want to have an audio book ready, might have pre prepared a lunch or a dinner, but me, I just love my nap.

So my friends ask, how's it going, can you tell the difference? I think they're expecting a cure. And I tell them, no, it's a treatment that may help slow the progression of it. I do take a vision test at each appointment. I realize I won't see improvement, but it is part of my doctor's routine process.

I am happy to be doing something that can help slow it down. And as long as I can see a golf ball at my feet, I'm a happy camper.

If you or your doctor think that SYFOVRE can help and you have fear of the injection, I say, just do it. If I can do it, you can do it. I understand the fear and reluctance.

Don't be like me. Don't wait unnecessarily long before seeking treatment. Talk to your doctor now to see if SYFOVRE is right for you.

Announcer Voice-over:

What is SYFOVRE?

SYFOVRE (pegcetacoplan injection) is a prescription eye injection, used to treat geographic atrophy (GA), the dry advanced form of age-related macular degeneration (AMD).

IMPORTANT SAFETY INFORMATION

Who should NOT receive SYFOVRE?

Do not receive SYFOVRE if you have an infection, or active swelling in or around your eye that may include pain and redness

SYFOVRE can cause serious side effects:

  • Eye infection (endophthalmitis) or separation of layers of the retina (retinal detachment)
    • Call your healthcare provider right away if you have eye redness, light sensitivity, eye pain, or any change in vision including blurred, wavy/distorted vision, small specks floating in your vision, or flashing lights
  • Severe inflammation of vessels in the retina which may result in severe vision loss. Call your healthcare provider right away if you have eye redness, light sensitivity, eye pain, or any change in vision including blurred, wavy/distorted vision, or flashing lights
  • Risk of developing wet AMD. You should be monitored for signs of wet AMD and you should report if you have any change in vision including blurred, wavy/distorted vision, black spots, or loss of central vision to your healthcare provider
  • Episodes of eye inflammation. You should report any symptoms including eye redness, light sensitivity, eye pain, small specks floating in your vision, or any changes in vision to your healthcare provider
  • Increase in eye pressure within minutes of the injection. Your healthcare provider will monitor this after each injection

Before receiving SYFOVRE:

  • Tell your healthcare provider if any of the following applies to you:
    • If you have a history of seeing flashes of light or small specks floating in your vision and notice a sudden increase of size and number of these specks
    • If you have high pressure in the eye or glaucoma
  • Tell your healthcare provider about all of your medical conditions, including
  • If you are, or think you are pregnant, breastfeeding, or are planning to have a baby, ask your doctor for advice before taking this medicine
  • Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements

What should I avoid while receiving SYFOVRE?

  • After an injection or an eye exam, your eyesight may temporarily be impaired. Do not drive or use machinery until your vision recovers

What are the most common side effects of SYFOVRE?

  • Eye discomfort
  • Wet age-related macular degeneration
  • Small specks floating in vision
  • Blood in the white of the eye

These are not all the possible side effects of SYFOVRE. Tell your healthcare provider about any side effect that bothers you or does not go away.

Call your healthcare provider for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

Please see the SYFOVRE full Prescribing Information for more information.

Everyone's experience with GA is unique. Your healthcare provider is your best source of information regarding your GA and whether SYFOVRE is right for you.

*Speakers are paid consultants of Apellis.

Speakers present via webcast for virtual programs.