Stargardt Disease, also known as macular dystrophy, is a genetic eye disease that causes progressive damage and degeneration of the macula. The macula is responsible for seeing sharp straight-ahead vision. The ABCA4 gene is linked to macular degeneration, which is central vision loss. The light sensitive cells in the retina deteriorate and affect the ability to fine focus, primarily the central vision.
An invisible illness is a disability or illness that is not immediately apparent or visible. These illnesses significantly impair daily living and normal activities while the individual appears normal and healthy. It is my mission to raise awareness on each chronic illness, lessen discrimination from the public, reduce misdiagnosis, to help others feel connected and not alone with their diagnosis, to share our stories to friends and loved ones for better understanding.
I interviewed Alyssa Hullinger to learn more about her invisible illness so that I could share her story. The first photo I took was to test my camera settings and the focus was on the background, all around Alyssa and not on her. After uploading the images, I viewed that first photo and realized: that is probably how she see everyone.
What is your official diagnosis?
When did you get diagnosed and how long did it take after initial symptoms?
I began seeing some “spots” in June of 2016. I was 7 months pregnant with my daughter at the time. In January of 2017, I went for a routine eye exam and found it very difficult to read the chart, specifically with my right eye. My eye dr is a close friend, she checked me out and brought in the ophthalmologist to ask his opinion. After he had a look, they immediately brought me in for a CT of both eyes and recommended I meet with a retina specialist. I met with the retina specialist in June and he suspected one of two genetic diseases that affect the macula. He recommended I see the genetic specialist at Bascom Palmer in Miami. I was diagnosed with stargardt’s by the genetic specialist in October of 2017.
What advice do you have for anyone struggling with this same diagnosis?
Stargardt’s is a degenerative disease and not one person is alike. I was angry for quite a while when I found out that I “should” expect to completely lose my central vision. The disease takes away the ability to see fine details. It is terrifying.
I would tell them that it’s ok to feel whatever emotions it is that they are feeling. Feel it out and then discard it. Because focusing on what you are afraid of will only bring it to the forefront. Be grateful for the things you can still see. Look at things. Really look at them. All of the time. Don’t miss any opportunity to watch everything. Study the faces and hands and bodies of the people you love most. Be in full time gratitude for all of the things you can see right now.
What are three things you can’t live without?
Of course my husband, my daughter and our new baby on the way. My family is my whole world. My husband is my rock.
It may be that when we no longer know what to do,
we have come to our real work,
and that when we no longer know which way to go,
we have begun our real journey.
The mind that is not baffled is not employed.
The impeded stream is the one that sings.
What are your daily struggles?
My biggest challenge is seeing faces. It’s so disheartening to not recognize people I have known forever. It is very challenging to make out the details in faces. Especially in backlit or dim lighting. The other day, I held out my hand to introduce myself to a person I’ve known for years. Also, reading to my 2 year old. I have a light that I clip on to books to be able to see a little better. It’s still a struggle sometimes to see words written in fancy fonts. Again, the fine details are challenging. I’ve learned to take my time when reading to her. She doesn’t understand why I’m reading slow and often becomes disinterested. Driving is becoming more challenging as well. I stopped driving at night (unless it’s a very short distance) and I won’t drive in places that I don’t know, even in daylight. I sometimes need to be reminded that I already know everything will be alright.
How do people respond when they find out about your diagnosis?
The most frustrating and most common response is when people ask “can’t you wear glasses?” I do wear contact lenses and/or glasses for near sightedness which is unrelated to this disease. Since my diagnosis, I have been getting my acuity tested every three months to help fine tune the sharpness of what I can see; my eye dr is magic. But no, there aren’t glasses that can “cure” this. If it was that easy of a fix, I certainly would already have them! I have kind of crafted a short description of stargardt’s to explain why my vision is altered. Usually the response after my speech is “that sucks!” Most people, especially my coworkers at my part time job, are super helpful when I ask what something says or for help finding things. I’m so grateful for their patience and kindness.
What inspires you and keeps you motivated despite your invisible illness?
My dear sweet great friend, Katy is one of my sources of inspiration. She rocked and lived like no one I have ever known, and she continues to rock on. Since the moment we met, she has inspired me to be better and do better. Also,my brother, Jimmie. No one works harder then he does. On top of his tireless dedication and determination, he is so kind and humble and generous. He is full of heart and his heart is love for his family and career.
My motivation is my family, of course. My husband has my back, always, and making sure to teach our children that there is always another way; we just have to get back up and keep trying. Also, I’m blessed with incredibly supportive, strong friends.