Alpha-thalassemia/mental retardation syndrome, x-linked

Healthcare/Doctors

How do I find and expert, experienced doctor or team who takes care of individuals with alpha-thalassemia X-linked intellectual disability syndrome?

There are no centers of excellence that are specifically devoted to caring for individuals with or research on alpha-thalassemia X-linked intellectual disability syndrome. A medical geneticist can be found by asking your doctor for a referral or looking on the American College of Medical Geneticists website.

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What specialists should a person with alpha-thalassemia X-linked intellectual disability syndrome see?

What specialists should a person with alpha-thalassemia X-linked intellectual disability syndrome see?

All individuals with alpha-thalassemia X-linked intellectual disability syndrome should be seen by a medical geneticist and a genetic counselor. These specialists can make sure that the person is being screened appropriately for possible medical and developmental issues. They can also make sure that up-to-date information on genetic testing is provided, as well as support resources and reproductive counseling.

The other specialists that an individual with alpha-thalassemia X-linked intellectual disability syndrome sees depend on the specific medical problems that person has. Because of the high incidence of developmental issues, speech, occupational and physical therapists are almost always involved in the care of affected individuals. Other specialists such as neurology, cardiology, hematology, orthopedics, surgery, and nutrition depend on the specific medical issues present in a given affected individual.

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