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Reifenstein syndrome - Treatment

Alternative Names

Partial androgen insensitivity syndrome; Incomplete male pseudohermaphroditism

Treatment:

Treatment with testosterone may improve the chance that a boy will be able to have children when he grows up.

Support Groups:

Androgen Insensitivity Syndrome Support Group (AISSG) -- www.medhelp.org/www/ais/

Intersex Society of North America (ISNA) -- www.isna.org

Expectations (prognosis):

Androgens are most important during early development in the womb. Those with Reifenstein syndrome can have a normal lifespan and be totally healthy, but they may be infertile and have psychological problems related to gender identity.

In the most severe cases, boys with outer female genitals or an extremely small penis may have psychological and emotional problems.

Genital surgery should be postponed until the patient is old enough to make the decision.

Complications:

  • Breast development in men
  • Infertility and failure to develop normal male genitals
  • Psychological problems, such as depression

Calling your health care provider:

Call your health care provider if you, your son, or a male family member has infertility or incomplete development of male genitals. Genetic testing and counseling are always recommended if this disease is suspected.

  • Reviewed last on: 10/15/2008
  • Diana Chambers, MS, EdD, Certified Genetics Counselor (ABMG), Charter Member of the ABGC, University of Tennessee, Memphis, TN. Review provided by VeriMed Healthcare Network. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.
The information provided herein should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed medical professional should be consulted for diagnosis and treatment of any and all medical conditions. Call 911 for all medical emergencies. Links to other sites are provided for information only -- they do not constitute endorsements of those other sites. © 1997- A.D.A.M., Inc. Any duplication or distribution of the information contained herein is strictly prohibited.
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