WHAT IS GLAUCOMA?
Glaucoma is an eye disorder that has been called the silent thief of sight, because there is no way to tell one has the disease until, in many instances, it is too late and vision loss has occurred. It is caused by an elevation of the intraocular pressure in the eye, which results in damage to the optic nerve. This occurs when there is too much fluid in the eye. This extra fluid causes pressure to build and damage the optic nerve resulting in a gradual loss of vision. Any vision lost cannot be regained. There are no symptoms and there is no warning. If left untreated, glaucoma can lead to blindness.
Glaucoma is one of the leading causes of blindness in America. It affects more than three million Americans. Certain groups of people are at higher risk of developing glaucoma -- those over the age of 35; those with family history of glaucoma; those with diabetes or high blood pressure; and African Americans. Gloria Hill's family, the Peoples family, has a long history of glaucoma and blindness.
Congenital glaucoma, which is the suspected culprit in the case of my sister's blindness, is present at birth. This form of glaucoma is rare and may be inherited from one or both parents, or may result from a maternal infection such as German measles.
I didn't know until my mother happened to mentioned one day, after glaucoma had claimed much of her sight, that she suspected some of her older family members may have had this eye disorder. Two of her father's uncles went blind. Nobody knew back then anything about glaucoma. They thought these family members simply went blind due to old age. But these troublesome revelations got me to thinking long and hard. My sister had been born blind. My mother and two of her sisters developed glaucoma and in spite of following doctor's orders, each went blind. Years later, glaucoma would rob my mother's older brother of his vision.Why? All of this prompted me to search for answers.
The more I thought about it, the more I knew I had to look further for answers to some serious questions and concerns. Why was my sister born blind? Why had my mother, two aunts steadily gone blind in spite of following doctor's orders? How many others in my family had been/are affected? How prevalent was it? And just how far back it did this unsettling family "legacy" extend?
It was during the mid-nineties that I began to study this eye disorder called glaucoma. I embarked on my mission with a vengeance, determined to learn as much as I could about this disturbing legacy. Through my research (mainly questioning family members), I came to the realization that there had been signs long ago -- several cases of visual problems, some blindness. Prior to my mother saying to me one day, "Now I know why my daddy's oldest brother went blind. He probably had this glaucoma," I'd had no inkling of any relatives that far back having gone blind, or having had any vision problems. I knew only that my sister was born (suspected of being the youngest victim of glaucoma) and that, over time, my mother and two of her sisters had lost most of their vision.
I began carefully charting family members and discovered that, besides several of my maternal grandfather's ancestors having been affected, a total of 50 of his descendants (and more, it was suspected) were affected in some way by glaucoma. A surprising number of family members down through the years had been affected in some way by this dreadful eye disease. Out of 13 siblings on my mother's side of the family, nine had glaucoma. I couldn't help wondering how many more, unknowingly, had been claimed by glaucoma.
My mother's father died young. And from all indications, he may have begun developing vision problems shortly before his demise. The fact that most of his thirteen offspring eventually developed glaucoma, suggested to me that he, most likely, had the glaucoma gene and passed it on to his children. I would learn, too, that my grandfather's youngest brother also had advance-stage glaucoma and had lost much of his sight before he passed away.
Realizing that a more serious look at this matter needed to be taken, I spoke with my ophthalmologist, then, Dr. Basil Morgan, about my findings. Because of our strong family history of glaucoma, he and a team of doctors from Johns Hopkins Hospital (JHH), including Dr. Donald Zack, Dr. Kang Zhang (and later Dr. David Friedman), offered to test family members over the age of 35 who wished to participate in a JHH Glaucoma Genetic Study. At Dr. Morgan's request, I spearheaded the effort to interest as many family members as possible in becoming part of the Study.
In 1997, an initial family meeting was held at my home. Dr. Basil Morgan and Dr. Kang Zhang were there. They informed everyone present (about 25 Peoples family members). It took a while to inform other family members about the proposed study and to receive their willingness to join the Study. In 1999, the JHH team of doctors began conducting the Peoples Glaucoma Genetic Study of 150 family members. The goal being, not only to find out if anyone had glaucoma but to identify the common defective gene running through our family that causes glaucoma, to isolate it, and eventually eradicate it from our gene pool.
Since 1999, each biennial family reunion has included glaucoma screenings and related tests by members of this unique Johns Hopkins team of doctors who, for many years, have traveled to our various family reunion sites throughout the country. It is my hope that the results of this study will provide answers that will assure future generations of the Peoples family that they will not have to worry about this eye disease robbing them of their sight. My hope, too, is that the results of this study will provide answers for millions of other glaucoma sufferers.
