Over the years “foreign limb syndrome,” once coined apotemnophilia, has changed names many times. You may have heard it called:

• Body integrity dysphoria (BID)
• Body integrity identity disorder (BIID)
• Amputee identity disorder
• Somatoparaphrenia

The most recent label to the syndrome is xenomelia, which literally translates to “foreign limb.” Whatever the name you identify the syndrome with, know that it’s rare, and it has had medical professionals puzzled and needing more research.

A Desire that Starts Young and Doesn’t Go Away

Xenomelia is an overwhelming or intense and long-standing desire to have one or more healthy body part(s), usually a limb, removed by amputation. It’s not always a limb that the individual feels is foreign or superfluous, sometimes they have the desire to become blind or deaf. Whether xenomelia is a neurological or psychiatric syndrome is debatable.

In 2005 a large-scale survey was done, via a structured telephone interview, of 52 individuals who self-identified as wanting to have an amputation. The findings established:

• The condition is rooted in childhood, before puberty, most often between 8-12 years old;
• There is marked distress, often leading to self-inflicted amputation attempts;
• Males are predominantly affected, but women are more likely to want bilateral amputations;
• It’s accompanied by a nontraditional admiration of “handicapped” individuals, especially amputees.
• Complete apathy and disregard of the impairment an amputation would cause.

Other characteristics include no relevant family psychiatric history and no past trauma to the undesired limb(s) or body part.

The “Cure”

Psychotherapy is often supported for those with xenomelia, such as prescribed anti-depressants. Unfortunately, the individuals still feels intense distress and feel that nothing but amputation can alleviate it. According to a PLOS one BIID study, “Amputation of the healthy body part appears to result in remission of BIID and an impressive improvement of quality of life. Knowledge of and respect for the desires of BIID individuals are the first steps in providing care and may decrease the huge burden they experience.”

Amputation requests of this nature are often denied by medical professionals, which sometimes prompts the individual with xenomelia to attempt self-amputation. The risky attempt to self-amputate usually injures the limb so bad that an actual (medically necessary) amputation must be performed by a medical professional.

Sources

Photo from Pexels.

U.S. National Library of Medicine National Institutes of Health (NIH), Body Integrity Identity Disorder

MDEdge™, Psychiatry, EVIDENCE-BASED REVIEWS, “Xenomelia: Profile of a man with intense desire to amputate a healthy limb,” August 2018.

First M. B. (2005). Desire for amputation of a limb: paraphilia, psychosis, or a new type of identity disorder. Psychol. Med. 35, 919–92810.1017/S0033291704003320