Frequently Asked Questions (FAQs) About Congental & Genetic Skin Conditions
Are congenital and genetic skin diseases contagious?
Are genetic test results 100% accurate?
Are there experimental drugs to treat genetic skin diseases?
Does Phoenix Children’s Hospital conduct clinical trials?
Does Phoenix Children’s Hospital treat adults with genetic skin diseases?
Is there a cure for congenital and genetic skin diseases?
What is Neurofibromatosis (NF)?
What is Tuberous Sclerosis (TS)?
Will my child need lifetime care?
Will we lose our health insurance if a genetic test is positive?
Are congenital and genetic skin diseases contagious?
No. Genetic skin diseases in children are inherited from one or both parents or caused by a gene mutation. These skin conditions are not contagious.
Are genetic test results 100% accurate?
No. Sometimes, genetic testing needs to be conducted more than once to get accurate results.
Are there experimental to treat genetic skin diseases?
There are promising new ointments and oral medications to alleviate symptoms of some congenital and genetic skin conditions. For instance, the ointment Rapamycin, which is not FDA approved, may help reduce neurofibromas.
Does Phoenix Children’s Hospital conduct clinical trials?
No. But the team at the Congenital and Genetic Skin Disease Clinic at Phoenix Children’s Hospital is a resource for children with congenital and genetic skin diseases. The team at the Clinic can help you find clinical trials and help you apply for those programs.
Does Phoenix Children’s Hospital treat adults with genetic skin diseases?
Yes. Adults with genetic skin diseases are sometimes referred to the Clinic at Phoenix Children’s Hospital.
Is there a cure for congenital and genetic skin diseases?
Not at this time. However, there are many treatments and medications available to alleviate symptoms of skin diseases.
Ichthyosis is a group of genetic skin conditions notable for dry, scaly skin that can cause overheating and sensitivity to cold. Children with Ichthyosis may also have fragile, easily damaged skin. Often, Ichthyosis causes dry, red ridges on the skin. It is incurable but many of its symptoms can be alleviated with medications.
What is Neurofibromatosis (NF)?
Neurofibromatosis is a group of skin conditions in children that cause tumors to grow on the nerves. These tumors can grow under the skin, on the eyes, on the brain or on major organs like the heart and lungs. NF symptoms range from mild to severe with the skin of some children covered with skin-colored nodules. The most severe cases can cause deformities, deafness and eye problems.
NF1 and NF2 are types of Neurofibromatosis (NF). Children with NF1 typically have skin-colored nodules on their skin. NF2 is rare and may cause tumors to grow on a child’s brain or spine.
What is Tuberous Sclerosis (TS)?
TS is a genetic condition that causes small tumors to grow on a child’s brain and other vital organs. While these tumors are usually benign, they can affect a child’s nervous system and cause seizures and developmental delays. Some children with TS may have red, sometimes bloody lesions on their face. There is no cure for TS but some symptoms, including lesions, can be alleviated with medication and other treatments.
Will my child need lifetime care?
Yes. Currently, many congenital and genetic skin diseases in children have treatments available to alleviate symptoms, but no cures.
Will we lose our health insurance if a genetic test is positive?
No. A federal law called the Genetic Information Nondiscrimination Act (GINA), which went into effect in 2009, prohibits insurance companies from denying people insurance or raising their insurance rates because of family medical histories or genetic test results.
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