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5 things parents should know about retinitis pigmentosa

mott blog - retinitis pigmentosaAn estimated 100,000 people in the U.S. have retinitis pigmentosa.   Retinitis pigmentosa (RP) is a group of related eye disorders that cause progressive vision loss. These disorders affect the retina, which is the layer of light-sensitive tissue at the back of the eye. Vision loss occurs as the light sensing cells of the retina gradually deteriorate. Initial symptoms include night vision problems and challenges with peripheral vision, or side vision. Individuals with RP may be diagnosed in early childhood or not until they are adults.

If your child or someone you know has been diagnosed with retinitis pigmentosa, here are 5 points that may help you understand this condition:

      1. If your child is affected by RP, he or she may be able to retain good central and reading vision for many years — up into adulthood. It is rare for someone affected with RP to lose all of his or her vision, but many will eventually meet the definition of legally blind (20/200 or worse vision or visual fields of less than 20 degrees).
      2. RP is considered a genetic disease. Some children affected with RP will know of a family member who has the condition. Sometimes several generations of family members are affected, but in other cases the disease is limited to a single generation. In other families, males are affected with the condition and females carry the disease-causing gene.
      3. Just because RP is a genetic disease, it doesn’t always mean that your child will have a family history of the condition. In fact, for 40 to 50 percent of those with RP, the affected individual is the only person in the family to have the condition. mott blog - 2 eye disease support groupThese isolated cases may be due to a recessive form of inheritance of the disease, a new mutation in the individual, or if previous generations are affected more mildly with disease.
      4. There is currently no cure for RP; however, that does not mean nothing can be done to help your child. You can look for the Low Vision Specialist in your child’s school who can create an individualized plan for school work and for navigating the classroom more easily.
      5. Several new approaches are being investigated to treat RP, such as gene therapy, stem cell therapy, and oral medications. A “retinal prosthesis” was recently approved by the FDA as a treatment for adults with end-stage RP.

Take the next step:

  • Please join us on November 2, 2013 for the second session of our Support Group for parents and families of children with eye disease and visual impairment.  This session will focus on retinal conditions, like retinitis pigmentosa. In addition to presentations by specialists and pediatric ophthalmologists, the program will include time for group discussions and Q&A sessions.  Attendees will also hear from Robert DeYoung and Andrea Marley who are visually impaired.  They will speak not only about their areas of expertise, but also provide personal insights about being visually impaired and living a fulfilling life. The meeting is open to all parents and families of children with eye disease and visual impairment.  Childcare and continental breakfast is provided.  Learn more and register.
  • To schedule an appointment to see the Kellogg Eye Center genetic counselors, please call 734.763.2280.

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keri branhamKari Branham, M.S., C.G.C., is a Genetic Counselor at the Kellogg Eye Center’s Retinal Dystrophy Clinic. The Kellogg Eye Center has two genetic counselors who work specifically with families affected by inherited eye disease such as RP. Ms. Branham’s research focuses on genetic studies of age-related macular degeneration and X-linked retinitis pigmentosa.

 

 

best children's hospitalUniversity of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” and among the 10 best children’s hospitals in the nation by Parents Magazine. In December 2011, the hospital opened our new 12-story, state-of-the-art facility offering cutting-edge specialty services for newborns, children and women.