Retinitis pigmentosa

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Will I die from retinitis pigmentosa?

Retinitis pigmentosa is a term that describes a group of conditions that cause retinal degeneration leading to progressive vision loss and often blindness. There are nonsyndromic, syndromic, and systemic forms of retinitis pigmentosa. The syndromic and systemic forms affect not only the eyes and vision, but also other systems such as hearing, the heart, etc. Nonsyndromic forms of retinitis pigmentosa affect only the vision and eyes. Nonsyndromic forms of retinitis pigmentosa are not lethal. Some syndromic and systemic forms of retinitis pigmentosa may cause other life-threatening problems that could limit a person's life span. For more on the life expectancy of syndromic or systemic forms of retinitis pigmentosa, search the specific diagnosis in question.

Individuals with nonsyndromic retinitis pigmentosa typically do not have significantly shortened life spans as compared to the average, unaffected individual. The vision loss associated with this disease could lead to complications or injuries that could affect an individual's life span, but overall, life expectancy in individuals with nonsyndromic retinitis pigmentosa is normal.

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How does pregnancy affect retinitis pigmentosa?

Can I find out if my baby has retinitis pigmentosa?

Can I live independently with retinitis pigmentosa?

How can I help my child cope with his/her diagnosis of retinitis pigmentosa?

What is life like for adults with retinitis pigmentosa?

How does pregnancy affect retinitis pigmentosa?

Retinitis pigmentosa is a term that describes a group of conditions that cause retinal degeneration leading to progressive vision loss and often blindness. There are nonsyndromic, syndromic, and systemic forms of retinitis pigmentosa. The syndromic and systemic forms affect not only the eyes and vision, but also other systems such as hearing, the heart, etc. Nonsyndromic forms of retinitis pigmentosa affect only the vision and eyes. Some syndromic and systemic forms of retinitis pigmentosa may cause othermedical problems that could affect a woman's fertility or the health of a pregnancy she might carry. For more on pregnancy for women with syndromic or systemic forms of retinitis pigmentosa, search the specific diagnosis in question.

Women with nonsyndromic retinitis pigmentosa can expect to have normal fertility and therefore can become pregnant. Nonetheless, pregnancy in these women should be managed and monitored by individuals familiar with the complexities that can arise. First, it is important to know that the common treatment for retinitis pigmentosa, high dose vitamin A palmitate supplementation, is to be avoided during pregnancy. This is because vitamin A palmitate can have adverse effects on a developing baby. Second, it has been noted that 5-10% of women with retinitis pigmentosa experience increased vision loss during pregnancy. This may or may not recover after the woman delivers her baby. Additionally, pregnancy may increase a woman's chance to develop eye complications such as retinopathy.

Women with retinitis pigmentosa considering pregnancy or who are pregnant should consider seeking consultation with a high-risk obstetrician known as a maternal-fetal-medicine as well as a genetic counselor. To find a genetic counselor in your area, go to the search page on the National Society of Genetic Counselors website.

Can I find out if my baby has retinitis pigmentosa?

It is possible in some cases to diagnose or rule out retinitis pigmentosa in a baby during pregnancy. This is typically only done when the baby is known to be at significant risk for the disease based on a history of the condition in one of the parents and/or another close family member. In order to test the baby, however, the causative gene change needs to have been identified in the affected family member(s). It is important to speak with a genetic counselor about what the chances are for the baby to inherit that gene change as well as the benefits, risks and limitations of any testing procedures, such as amniocentesis and chorionic villus sampling. To find a genetic counselor in your area, go to the search page on the National Society of Genetic Counselors website.

Can I live independently with retinitis pigmentosa?

Retinitis pigmentosa is a progressive disease, often leading to blindness some time in adulthood. Nonetheless, most individuals with retinitis pigmentosa can maintain relatively independent lifestyles into late adulthood. It should be noted that there are syndromic and systemic forms of retinitis pigmentosa that affect not only a person's vision, but other things such as hearing, learning, heart health, etc. Therefore, individuals with syndromic or systemic forms of retinitis pigmentosa may have additional issues that affect their ability to live independently.

In order to maintain independence, individuals with retinitis pigmentosa often find it helpful to seek support from organizations that provide vocational, mobility and independent life skills training. This training can help affected individuals navigate their homes and the outside world safely and independently, teaching them how to adapt their environment as necessary to maintain their ability to do every things such as cooking, self-hygiene, and housekeeping.

How can I help my child cope with his/her diagnosis of retinitis pigmentosa?

When a child has been diagnosed with retinitis pigmentosa, it is normal for them to feel scared, angry, or overwhelmed about what their future holds. It is important for family members to have open, honest discussions with the child to help him or her get their feelings out and start to cope with the diagnosis. It may be helpful to get advice from experts about how to have these conversations and how best to support the child. This could involve physicians, social workers, or mental health professionals. It is important to let the child know that although there is no cure for retinitis pigmentosa now, scientists are working hard to try to find new ways to treat the condition and slow its progress. Furthermore, many researchers believe that a cure may be possible in the not-too-distant future. Nonetheless, it is also important to let the child know that even without a cure, individuals with retinitis pigmentosa can live almost completely independently well into later adulthood and that the condition itself does not significantly limit a person's ability to go to school, have a family, or choose a career.

As the child grows and their vision loss progresses, they will likely need extra help at school. It is important that parents of a child with retinitis pigmentosa involve all of the child's teachers as well as school administrators in planning for how best to adapt that child's learning environment. Sitting closer to the front of the class, using aids such as a magnifier or certain technology to enlarge print, and assistance navigating around the classroom and elsewhere at school are just a few things that can help. A yearly individual education plan (IEP) is recommended to make sure the child, his or her family, and school officials have an agreement upon how to meet the child's needs appropriately.

Most teachers and school officials will not be familiar with the diagnosis of retinitis pigmentosa. Therefore, asking your child's doctor to give you some helpful information to share with them, or providing them with an informational packet such as this one, from the University of Michigan Kellogg Eye Center, may help school personnel understand the important details of this condition.

What is life like for adults with retinitis pigmentosa?

In general, adults with retinitis pigmentosa can live fulfilling and typical lives. People with the nonsyndromic forms of this condition do not have non-vision-related complications, so they can expect to have good health, and because they do not have problems with thinking or learning, they can successfully seek higher education and have a wide variety of careers. Nonetheless, their condition can affect their quality of life and their experiences. Some adults with retinitis pigmentosa describe having increased social problems, and may have increased anxiety or depression due to worry about their disease progression.

As the disease progression, adults may find their work becoming increasingly difficult. Nonetheless, working with their employers and outside service agencies, they should be able to adapt things to allow them to continue to work in their field of choice. In some cases, however, depending on the field in which they are employed, a career change may be necessary. Most states have agencies dedicated to serving the vision-impaired and blind that can help individuals and employers work together to allow the individual continue to work. It is also important to realize that the American Disabilities Act protects individuals with disabilities, including retinitis pigmentosa-associated vision loss or blindness, from being discriminated against in the workplace and elsewhere.

In many cases, in later adulthood, when the disease has progressed sufficiently, work outside the home may no longer be an option. In this case, applying for disability benefits may be required. To apply for disability benefits, one may contact her or her local Social Security agency, or alternatively can apply online at their website.

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