Megan's Story
I was born with Usher syndrome, the leading cause of deaf/blindness. I am profoundly deaf and losing my vision.
Ever since I was small, people automatically expect the least of me when they discover I’m deaf; my life’s goal has been to prove those people wrong. Because of other’s low expectations, I have been an extremely hard worker all my life.
Proving people wrong and establishing myself has been a daily struggle – even though I have a cochlear implant (an electronic device that allows me to hear to a degree) and speak well, my social life has been heavily impacted because of my difficulty hearing and understanding what people are saying. I have few friends because of my deafness, but the few I do have, I cherish. Even though being deaf poses a daily struggle, I have accepted this fact and am generally comfortable with it.
On the other hand, I am going blind. This is the fact that I have been unable to accept, and is what makes me cry at night. Since it’s a gradual process of my peripheral vision slowly disappearing, literally all I can do is sit and wait. There is no cure for this, and no “miracle product” like the cochlear implant for my ears. The doctors have told me that my sight most likely will decrease severely in my second year of college.
I also can never drive because of my inability to see in the dark. My balance is also affected by the combined effects of my deafness and blindness. The doctors told my parents that because of this, I would never be able to ride a bike. Being from an avid biking family, one of their first priorities was to prove them wrong, of course. I used to ride with my parents on a tandem bicycle and rode for a short time myself until I no longer could due to my disability.
My sense of independence obviously has taken a severe beating by the ramifications of my eye disability, and my self-esteem has always been significantly low. However, I absolutely refuse to let my disability limit me in what I can do. I am NOT going to allow my disability define me.
About Usher Syndrome
Usher syndrome is the leading cause of deaf-blindness in the world. Approximately 45,000 Americans are affected by this genetic disorder. Children with Usher syndrome are born with or develop hearing loss and may also be born with or develop vestibular issues which adversely affect their balance. Early in life they will experience symptoms of a progressive vision disorder known as retinitis pigmentosa (RP). Initially, they will develop night blindness, followed by a narrowing of the visual field, commonly known as tunnel vision. Most individuals with Usher syndrome are legally blind by the time they are young adults.
About the Coalition
Based in the United States, the Coalition for Usher Syndrome Research is a 501(c)3 non-profit organization dedicated to helping families cope with Usher syndrome while working diligently to find a cure. Our goal is simple: Provide hope to families with Usher syndrome.
Learn more: www.usher-syndrome.org
I was born with Usher syndrome, the leading cause of deaf/blindness. I am profoundly deaf and losing my vision.
Ever since I was small, people automatically expect the least of me when they discover I’m deaf; my life’s goal has been to prove those people wrong. Because of other’s low expectations, I have been an extremely hard worker all my life.
Proving people wrong and establishing myself has been a daily struggle – even though I have a cochlear implant (an electronic device that allows me to hear to a degree) and speak well, my social life has been heavily impacted because of my difficulty hearing and understanding what people are saying. I have few friends because of my deafness, but the few I do have, I cherish. Even though being deaf poses a daily struggle, I have accepted this fact and am generally comfortable with it.
On the other hand, I am going blind. This is the fact that I have been unable to accept, and is what makes me cry at night. Since it’s a gradual process of my peripheral vision slowly disappearing, literally all I can do is sit and wait. There is no cure for this, and no “miracle product” like the cochlear implant for my ears. The doctors have told me that my sight most likely will decrease severely in my second year of college.
I also can never drive because of my inability to see in the dark. My balance is also affected by the combined effects of my deafness and blindness. The doctors told my parents that because of this, I would never be able to ride a bike. Being from an avid biking family, one of their first priorities was to prove them wrong, of course. I used to ride with my parents on a tandem bicycle and rode for a short time myself until I no longer could due to my disability.
My sense of independence obviously has taken a severe beating by the ramifications of my eye disability, and my self-esteem has always been significantly low. However, I absolutely refuse to let my disability limit me in what I can do. I am NOT going to allow my disability define me.
About Usher Syndrome
Usher syndrome is the leading cause of deaf-blindness in the world. Approximately 45,000 Americans are affected by this genetic disorder. Children with Usher syndrome are born with or develop hearing loss and may also be born with or develop vestibular issues which adversely affect their balance. Early in life they will experience symptoms of a progressive vision disorder known as retinitis pigmentosa (RP). Initially, they will develop night blindness, followed by a narrowing of the visual field, commonly known as tunnel vision. Most individuals with Usher syndrome are legally blind by the time they are young adults.
About the Coalition
Based in the United States, the Coalition for Usher Syndrome Research is a 501(c)3 non-profit organization dedicated to helping families cope with Usher syndrome while working diligently to find a cure. Our goal is simple: Provide hope to families with Usher syndrome.
Learn more: www.usher-syndrome.org
