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Growing Strong Through Challenges d Marilyn (L to R) Denise an Denise DeJong and Marilyn Steffen are not only identical twins, they also share the condition Retinitis Pigmentosa (RP), a genetic disorder of the eyes causing loss of vision. The two, along with their nearly eleven-month older brother, were diagnosed with the condition several years ago, at the young age of twenty. Though neither their father nor mother had developed the condition, they were both carriers of the recessive gene. The older three children in the family developed the condition while the two younger sisters did not. Forms of RP vary, depending on how it runs in your family and what part of the spectrum it falls in. The type of RP in this family leaves many people completely blind in their twenties. Though the degenerative condition has caused their vision to worsen over the years, Denise and Marilyn still have some limited vision. They have less than 10% of their peripheral vision, or vision that lies outside the center of their line of sight, but still have partial center vision. They compare their vision to putting a small funnel in front of your eye. Their vision is a bit clearer as the funnel broadens, though over the years that has become foggier and spotted. They explain that it’s hard to tell if their condition has worsened due to RP or the aging process. As children, they always felt something was wrong with their vision because of their night blindness. When Denise was tested, and the condition was discovered, the rest of the family was tested as well. That’s when they discovered that three of the children in the family had developed RP. Marilyn explains that it was almost a relief when they were diagnosed as it gave a reason behind their visual 8vHERVOICEvMARCH/APRIL 2018

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