Body integrity identity disorder.
ABSTRACT Body Integrity Identity Disorder (BIID) is a rare, infrequently studied and highly secretive condition in which there is a mismatch between the mental body image and the physical body. Subjects suffering from BIID have an intense desire to amputate a major limb or severe the spinal cord in order to become paralyzed. Aim of the study is to broaden the knowledge of BIID amongst medical professionals, by describing all who deal with BIID.
Somatic, psychiatric and BIID characteristic data were collected from 54 BIID individuals using a detailed questionnaire. Subsequently, data of different subtypes of BIID (i.e. wish for amputation or paralyzation) were evaluated. Finally, disruption in work, social and family life due to BIID in subjects with and without amputation were compared.
Based on the subjects' reports we found that BIID has an onset in early childhood. The main rationale given for their desire for body modification is to feel complete or to feel satisfied inside. Somatic and severe psychiatric co-morbidity is unusual, but depressive symptoms and mood disorders can be present, possibly secondary to the enormous distress BIID puts upon a person. Amputation and paralyzation variant do not differ in any clinical variable. Surgery is found helpful in all subjects who underwent amputation and those subjects score significantly lower on a disability scale than BIID subjects without body modification.
The amputation variant and paralyzation variant of BIID are to be considered as one of the same condition. 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.
- SourceAvailable from: Bigna Lenggenhager[Show abstract] [Hide abstract]
ABSTRACT: Xenomelia, the "foreign limb syndrome," is characterized by the non-acceptance of one or more of one's own extremities and the resulting desire for elective limb amputation or paralysis. Formerly labeled "body integrity identity disorder" (BIID), the condition was originally considered a psychological or psychiatric disorder, but a brain-centered Zeitgeist and a rapidly growing interest in the neural underpinnings of bodily self-consciousness has shifted the focus toward dysfunctional central nervous system circuits. The present article outlays both mind-based and brain-based views highlighting their shortcomings. We propose that full insight into what should be conceived a "xenomelia spectrum disorder" will require interpretation of individual symptomatology in a social context. A proper social neuroscience of xenomelia respects the functional neuroanatomy of corporeal awareness, but also acknowledges the brain's plasticity in response to an individual's history, which is lived against a cultural background. This integrated view of xenomelia will promote the subfield of consciousness research concerned with the unity of body and self.Frontiers in Psychology 01/2013; 4:204. · 2.80 Impact Factor
- [Show abstract] [Hide abstract]
ABSTRACT: Today, the anthropomorphism of the tools and the development of neural interfaces require reconsidering the concept of human-tools interaction in the framework of human augmentation. This review analyzes the plastic process that the brain undergoes when it comes into contact with augmenting artificial sensors and effectors and, on the other hand, the changes that the use of external augmenting devices produces in the brain. Hitherto, few studies investigated the neural correlates of augmentation, but clues on it can be borrowed from logically-related paradigms: sensorimotor training, cognitive enhancement, cross-modal plasticity, sensorimotor functional substitution, use and embodiment of tools. Augmentation modifies function and structure of a number of areas, i.e. primary sensory cortices shape their receptive fields to become sensitive to novel inputs. Motor areas adapt the neuroprosthesis representation firing-rate to refine kinematics. As for normal motor outputs, the learning process recruits motor and premotor cortices and the acquisition of proficiency decreases attentional recruitment, focuses the activity on sensorimotor areas and increases the basal ganglia drive on the cortex. Augmentation deeply relies on the frontoparietal network. In particular, premotor cortex is involved in learning the control of an external effector and owns the tool motor representation, while the intraparietal sulcus extracts its visual features. In these areas, multisensory integration neurons enlarge their receptive fields to embody supernumerary limbs. For operating an anthropomorphic neuroprosthesis, the mirror system is required to understand the meaning of the action, the cerebellum for the formation of its internal model and the insula for its interoception. In conclusion, anthropomorphic sensorized devices can provide the critical sensory afferences to evolve the exploitation of tools through their embodiment, reshaping the body representation and the sense of the self.Frontiers in Systems Neuroscience 01/2014; 8(109).
- [Show abstract] [Hide abstract]
ABSTRACT: This review summarizes the available studies of a rare condition in which individuals seek the amputation of a healthy limb or desire to be paraplegic. Since 1977, case reports and group studies have been produced, trying to understand the cause of this unusual desire. The main etiological hypotheses are presented, from the psychological/psychiatric to the most recent neurologic explanation. The paradigms adopted and the clinical features are compared across studies and analyzed in detail. Finally, future directions and ethical implications are discussed. A proposal is made to adopt a multidisciplinary approach that comprises state-of-the-art technologies and a variety of theoretical models, including both body representation and psychological and sexual components.Neuropsychiatric Disease and Treatment 01/2014; 10:1255-65. · 2.00 Impact Factor
Body Integrity Identity Disorder
Rianne M. Blom1, Raoul C. Hennekam2, Damiaan Denys1,3*
1Department of Psychiatry, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands, 2Departments of Paediatrics and Translational Genetics,
Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands, 3The Netherlands Institute for Neuroscience, an institute of the Royal Netherlands
Academy of Arts and Sciences, Amsterdam, The Netherlands
Introduction: Body Integrity Identity Disorder (BIID) is a rare, infrequently studied and highly secretive condition in which
there is a mismatch between the mental body image and the physical body. Subjects suffering from BIID have an intense
desire to amputate a major limb or severe the spinal cord in order to become paralyzed. Aim of the study is to broaden the
knowledge of BIID amongst medical professionals, by describing all who deal with BIID.
Methods: Somatic, psychiatric and BIID characteristic data were collected from 54 BIID individuals using a detailed
questionnaire. Subsequently, data of different subtypes of BIID (i.e. wish for amputation or paralyzation) were evaluated.
Finally, disruption in work, social and family life due to BIID in subjects with and without amputation were compared.
Results: Based on the subjects’ reports we found that BIID has an onset in early childhood. The main rationale given for their
desire for body modification is to feel complete or to feel satisfied inside. Somatic and severe psychiatric co-morbidity is
unusual, but depressive symptoms and mood disorders can be present, possibly secondary to the enormous distress BIID
puts upon a person. Amputation and paralyzation variant do not differ in any clinical variable. Surgery is found helpful in all
subjects who underwent amputation and those subjects score significantly lower on a disability scale than BIID subjects
without body modification.
Conclusions: The amputation variant and paralyzation variant of BIID are to be considered as one of the same condition.
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.
Citation: Blom RM, Hennekam RC, Denys D (2012) Body Integrity Identity Disorder. PLoS ONE 7(4): e34702. doi:10.1371/journal.pone.0034702
Editor: Ben J. Harrison, The University of Melbourne, Australia
Received September 9, 2011; Accepted March 7, 2012; Published April 13, 2012
Copyright: ? 2012 Blom et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits
unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Funding: The study was supported by the Academic Medical Center Amsterdam (internal funding). The funding agency had no role in the design and conduct of
the study; in the collection, analysis, and interpretation of the data; or in the preparation, review, or approval of the manuscript. There are no current external
funding sources for this study.
Competing Interests: All authors have completed the Unified Competing Interest form at www.icmje.org/coi_disclosure.pdf (available on request from the
corresponding author) and declare: no support from any organization for the submitted work; no financial relationships with any organizations that might have
an interest in the submitted work in the previous three years; no other relationships or activities that could appear to have influenced the submitted work.
* E-mail: firstname.lastname@example.org
Body Integrity Identity Disorder (BIID) is a rare condition in
which persons typically report an intense desire either to be
paralyzed or to have one or more of their healthy limbs to be
amputated [1–3]. BIID is not a paraphilia  nor does the desire
to amputate the limb reflect psychosis amputation . Rather it is
believed that BIID is an identity disorder [1–3,6]. The main
motivation for the preferred body modification is believed to be a
mismatch between actual and perceived body schema [1,7]. The
symptoms of BIID parallel those in somatoparaphrenia, a
syndrome occurring secondary to right parietal lobe damage by
a cerebral tumor or stroke. This similarity, coupled with the early
onset, suggests that BIID could be a congenital disorder [7–10].
Currently BIID is not included in the International Statistical
Classification of Diseases 11 or the Diagnostic and Statistical
Manual of Mental Disorders IV. As such this disorder is often not
known to surgeons, neurologist and psychiatrists. To exasperate
this issue, BIID individuals typically avoid healthcare and often act
out their desires by pretending they are disabled or perform actual
Previous studies on BIID almost exclusively focus on the desire
for amputation [1,15,16]. However, on internet-based forums also
people with a wish for a disability other than amputation describe
that they recognize themselves as having BIID [17,18]. Therefore,
some researchers have proposed to broaden the intended use of
BIID to refer to individuals with a persistent desire to acquire a
physical disability [2,3]. These other variants of BIID have not
been investigated so far.
The present study aims to provide detailed phenomenology of
BIID through the use of a detailed questionnaire given to a large
group of BIID individuals. Since studies on BIID are limited our
main goal is to broaden the knowledge of BIID in all healthcare
professionals. This is done by describing all who deal with BIID
and by determining whether BIID variants are significantly
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Main objective of the study is to provide detailed somatic,
psychiatric, social and BIID characteristics of a large group of
BIID individuals, in order to broaden the knowledge of BIID
amongst all medical professionals. Secondary, objectives are to
compare BIID variants on clinical measures and to compare
disruption in work, social and family life due to BIID in amputated
versus non-amputated subjects.
Participants and procedures
Subjects who had identified themselves as having BIID (i.e.
recognizing themselves in the following sentence: ‘‘BIID is a term
that covers several conditions in which people feel their body-image does not
match with their body shape. When we use the term ‘‘BIID’’ or ‘‘BIID
feelings’’ here we mean to indicate all these different forms of the condition. For
example, some people would like to have their leg to be amputated under their
knee, whereas others prefer to resemble someone who is paralysed.’’) were
recruited between 24.12.2010 and 01.11.2011. Participants
included (1) referrals from the psychiatry department of the
Academic Medical Center Amsterdam (n=6); (2) responders to
research announcements distributed on BIID related websites
(n=42); (3) referrals from individuals who had already participated
in the study (n=7).
Since BIID is a highly secretive condition, all first communi-
cations were through the internet. Individuals which indicated to
be interested were sent by e-mail full participant information by e-
mail. After returning written consent, participants were invited to
visit a secured website for the questionnaires. Five individuals
preferred to visit the clinic and were seen in person. Fifty-eight
subjects recognized themselves as having BIID and completed the
survey. However, in 4 subjects the ‘not feeling complete in their
own body’ was not the main motivation for body modification: one
subjects’ reason to modify his body was to feel sexually aroused, two
subjects because of the attention it draws and for the last subject
because the process of modification was the main focus of the desire. In
order to generate a homogeneous sample, those 4 subjects were
excluded from all analyses.
The questionnaire consisted of 6 parts totalling 112 questions,
usually multiple choice, with space for additional comments or
options. The BIID Phenomenology Questionnaire was build by
the authors, included epidemiologic, medically directed, and
specific BIID related questions, and included results from previous
reports [1,15,16] (questionnaire available as Figure S1).
The Sheehan Disability Scale (SDS) is scale measuring
functional impairment due to illness in work, family and social
To measure the severity of the BIID symptoms we adapted the
Yale-Brown Obsessive-Compulsive Scale (Y-BOCS) [20,21]. In 5-
item scales (range 0–20) individuals were asked about the time they
spent; the interference they experienced due to; the distress they
had caused by; the resistance against; and the control they had
over thoughts and activities of their BIID. Scores from 0–3 are
considered indicative for subclinical BIID symptoms, 4–7 mild, 8–
11 moderate, 12–15 severe, and 16–20 extreme (Y-BOCS
questionnaire available as Figure S2).
The Mini-International Neuropsychiatric Interview Screen
(MINI screen) is a self-rated, 25-item scale screening for the most
common psychiatric disorders (i.e. depression, dysthymia, bi-polar
disorder, panic disorder, social phobia, obsessive-compulsive
disorder, post traumatic stress disorder, psychotic disorder,
substance abuse, anorexia nervosa, bulimia nervosa, general
anxiety disorder) .
The Beck Anxiety Inventory (BAI) is a self-rated, 21-item
inventory measuring the severity of anxiety symptoms .
The Beck Depression Inventory (BDI): is a self-rated, 21-item
inventory measuring the severity of depressive symptoms .
The study has been approved by the Medical Ethical
Committee of the AMC-Amsterdam in accordance with the
Declaration of Helsinki amended in Seoul in 2008.
Subjects who solely had a lifetime wish for amputation where
placed in the amputation-group, whereas subjects with another
wish for disability than solely amputation, were placed in the
paralyzation-group. The small sizes of groups limited statistical
analysis. We therefore describe the results qualitatively.
Upon qualitatively screening the results, large differences were
seen in SDS scores between amputated versus non amputated
subjects. Therefore statistics were performed to compare these
scores. The difference was analyzed using the Mann-Whitney U-
test, a non parametric test. Predictive Analytic Software (PWAS)
for Windows 18.0 (SPSS Inc, Chicago Illinois) was used to perform
these statistical analyses.
Fifty-four BIID subjects completed the survey and indicated that
the main rationale for their desire for body modification is to feel
complete or to feel satisfied inside . Sexual arousal concerning their
BIID (i.e. being aroused when seeing someone disabled resembling
their BIID or when imagining themselves being disabled) was
present in almost half of the subjects, but was never the primary
rationale for their desired body modification. 79.6% were males,
96.3% were of Caucasian origin, 64.8% had a university degree,
and age range was 18–76 years.
Amputation of one or more limbs was preferred by 30 (55.6%)
‘‘I can feel exactly the line where my leg should end and my stump should begin.
Sometimes this line hurts or feels numb.’’ Twenty-four (44.4%) wished to
be disabled in another way than limb amputation. Of those most
(23/24) wished to have a form of paralysis and one preferred to
have club-feet (Table 1). Upon qualitatively screening the results
the two groups did not indicated an important difference on any
item. Fifteen subjects (27.8%) described their preferred body part
had changed overtime: (e.g. 5 went from leg amputation to spinal
Physical comorbidity appeared to be infrequent (Table 2). If
BIID individuals had a unilateral modification preference (n=20),
70.0% expressed a wish for amputation on the non-dominant side
of their body. Medical problems concerning the affected body part
(i.e. the part of the body they wish to be either amputated or
paralyzed) were all reported to develop after onset of the BIID.
Some (such as muscle weakness) were due to manifest avoidance of
use of the affected body part. Individuals reporting their body part
to feel different, often explain that their limb feels alien: ‘‘My limbs
do not feel like they belong to me, and should not be there’’.
Diagnoses of lifetime psychiatric co-morbidity (Table 3) were
based on self-report of diagnoses made by participants’ therapists.
Current psychiatric disorders were also scored positive in the
M.I.N.I. screen, which reinforced the likelihood of their presence.
One subject was diagnosed with schizophrenia. Her BIID feelings
were present as long as she could remember, from the age of 5,
while her hallucinations started later on. The hallucinations
involved ‘her name being called’ and visual hallucinations such as
‘the room moving when turning her head’. Her hallucinations
Body Integrity Identity Disorder
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diminished in strength following antipsychotic medication, but had
no influence at all on her BIID feelings. In addition, her BIID
feelings were always present, whereas her hallucinations tended to
come in waves. Moreover, her motivation for paralyzation was her
wish to feel complete, and not a punishment of God, of getting rid of the
Devil as seen in self-performed amputations in schizophrenics .
We concluded that her BIID thoughts differed enough from her
hallucinations that her wish for amputation was not psychotic.
None of the other subjects reported a psychotic psychiatric
diagnosis and neither scored positive on the M.I.N.I. screen for
psychotic symptoms. Depressive and anxiety symptoms were
reported somewhat higher than in the general population.
The social impact of having BIID was enormous (Table 2).
‘‘BIID occupies every waking moment of my life, and even keeps me awake at
night. Insomnia is severe most nights’’. Severity of symptoms such as the
obsession with their limbs was severe (13.2 out of 20 on the
adapted version of the Y-BOCS). Psychotherapy was often
supportive, but did not help diminishing BIID symptoms: ‘‘While
psychotherapy did not help BIID directly, it did help understanding my
relationship to BIID.’’ Antidepressants were felt helpful to reduce
depressive symptoms related to BIID, but antipsychotics were not.
Actual amputation of the limb was effective in all 7 cases who had
surgical treatment. ‘‘I’m wondering if I am eligible to participate in this
study, because since my amputation I do not have BIID feelings anymore’’.
Comparisons on the SDS of subjects with and without amputation
were significant in all items, suggesting less disability after
amputation (Table 2).
A large group of BIID individuals (n=54) was phenotyped
using a questionnaire. BIID has an onset in early childhood; 80%
are men. Main rationale given for their desire for body
modification is to feel complete or to feel satisfied inside, sexual
motives are often secondary. Prevalence rates of homosexual and
bisexual orientation are high. Somatic and severe psychiatric co-
morbidity is unusual, but depressive symptoms and mood
disorders can be present, possibly secondary to the enormous
distress BIID puts upon a person. BIID influences lives of affected
subjects in all facets in an extreme way. Subjects that underwent
amputation score significantly lower on a disability scale than
BIID subjects who did not undergo body modification, suggesting
that surgery does offer benefits to subjects.
Three observational studies have described BIID individuals
before [1,15,16]. This report extended those studies by using a
larger group of participants, recruiting individuals with an identity
disorder (instead of a wish for amputation) and including the
description of the paralyzation variant. Our results seem to be
largely in keeping with those reported before.
Concurring with previous literature, we also find that the level
of distress in BIID subjects is high . Obsessions with BIID are
present every day, many individuals spent time pretending, using
crutches, bandage their limbs or using a wheelchair. ‘‘I am using a
wheelchair ‘‘full time’’ when I’m in public. I walk at home. This is the only
way how to remain somewhat functional.’’ The thoughts and activities
around BIID disrupt social life, work, and family life. BIID
individuals disclose their BIID to their family and friends in just
half of the cases.
Subjects who actually had performed amputation scored
significantly lower on the Sheehan Disability Scale compared to those
who had not. BIID individuals prefer being in harmony with one’s
identity, even if it results in physical disability. Surgery appears to
result in permanent remission of BIID and in impressive
improvement of quality of life, but conflicts with ethical standards
of physicians indicating not to amputate healthy limbs [25,26].
Since there are no clear differences in any other parameter
between the amputation and paralyzation BIID variants, we
consider these as the same condition. We hypothesize that
amputation of the body part affected in the paralyzation variant
would usually lead to incompatibility with life if it would be
amputated and therefore people (unconsciously) prefer to be
paralyzed. Alternatively individuals with the paralyzation variant
may specifically seek to be paralyzed as such.
Table 1. BIID manifestations as self-reported in questionnaires in BIID individuals.
Amputation (n=30) Paralysation (n=24) Total (n=54)
Age of onset (mean – range)7.0 (3–12)6.3 (3–15) 6.7 (3–15)
Females (biological sex) (n – (%)) 3 (10.0) 7 (29.2)10 (18.5)
Site (n – (%))*Left 11 (36.7)Left 0 (0.0) Left 11 (20.4)
Right 9 (30.0)Right 0 (0.0)Right 9 (16.7)
Bilateral 10 (33.3) Bilateral 24 (100.0) Bilateral 34 (63.0)
Change site over time (n – (%))10 (33.3)5 (20.8) 15 (27.8)
Presence (n – (%))
-Always14 (46.7) 8 (33.3)22 (40.7)
-Sometimes limited13 (43.3)13 (54.2)26 (48.1)
-Sometimes absent3 (10.0)3 (12.5)6 (11.1)
Body modification (n – (%))
Ever thought of it27 (90.0)20 (83.3)47 (87.0)
Ever tried myself10 (33.3)6 (25.0)16 (29.6)
Consulted physician12 (40.0)4 (16.7)16 (29.6)
Modification is performed 7 (23.3)-7 (13.0)
*3 left under knee amp; 8 left above knee amp; 7 right above knee amp; 1 right under knee amp; 6 bilateral above knee amp; 2 bilateral under knee amp; 1 right above
elbow amp; 1 bilateral above elbow amp; 1 tetra amputation; 18 lower back paralysation; 1 spastic paraperesis of legs; 1 lower back paralysation and left below elbow
amp; 1 paralysis starting at thighs; 2 partial lower back paralysation; 1 clubfeet.
Body Integrity Identity Disorder
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In the present study the main reasons reported for body
modification in all subjects were to feel whole, complete, set right
again or to feel satisfied inside, none of the subjects had primary
sexual motives. However 25 (46.3%) subjects felt sexually aroused
when seeing someone disabled resembling their BIID and 24
(44.4%) felt sexually aroused when imagining themselves being
disabled. Possibly the sexual component in BIID is often one of
feeling sexually more comfortable with one’s body . ‘‘I maybe am
more comfortable sexually with myself and others as an amputee, because I
would be a complete person.’’
Physical co-morbidity reported both here and in literature is
infrequent, and prevalence is probably not different to that in the
general population. Detailed comparisons are hampered by the
widespread geographical distribution and age range of partici-
pants. Possibly, the occurrence of a lumbar hernia (n=5 in present
study and n=4 in Blanke et al. ) may be higher. In all, the
BIID onset preceded the hernia manifestations. Two BIID
individuals with the paralyzation form from in the present study
and one with the amputation form reported by First et al. stated to
have an intersex condition (see Table 3) . These rates are
substantially higher than in the general population  and
therefore might suggest a common pathway in developing identity
disorders . However there can be a significant ascertainment
bias, so it still remains uncertain at present whether there is a true
relation between intersexuality and BIID.
Psychiatric co-morbidity in present study and literature shows
no obvious difference compared to the general population, except
for an increase in depressive symptoms and mood disorders in
present study and also in literature [1,15]. We suggest these
symptoms to be secondary to BIID due to the high distress level,
and not to represent a separate manifestation. One of the BIID
individuals was schizophrenic, however her BIID thoughts were
not considered as part of a psychosis. On the other hand,
amputation due to psychosis is known to occur but is not
considered to be BIID since the motivation for amputation is often
delusional like ‘‘performing mission for God’’ or ‘‘Rid herself of a
devil that had entered hand and made her do bad things’’ .
The present study shows high rates of bisexual and homosexual
orientation in BIID individuals, as reported by most [1,28,29] but
not all others . One might speculate that the presence of a less
prevalent sexual orientation makes a person more open to speak
about their BIID identity.
Table 2. Social aspects of 54 BIID individuals as self-reported in questionnaires.
In a relationship with significant other (n – (%))23 (76.6)10 (41.7)33 (61.1)
Sexual orientation (n – (%))
-Heterosexual17 (56.7)13 (54.2)30 (55.6)
-Homosexual8 (26.7) 7 (29.2)15 (27.8)
-Bisexual 5 (16.7)4 (16.7) 9 (16.7)
Specific sexual desires (n – (%))
Aroused when seeing someone disabled resembling my BIID14 (46.7)11 (45.8)25 (46.3)
Aroused when imagining myself being disabled15 (50.0)9 (30.0)24 (44.4)
Aroused when dressing like the other gender2 (6.7)1 (4.2)3 (5.6)
Disclose BIID (n – (%))
To partner (in case of having one)18 (72.0) 9 (60.0)27 (67.5)
To close friends (in case of having close friends)15 (50.0)16 (66.7)31 (57.4)
To close family (in case of having family)10 (33.3)6 (25.0)16 (29.6)
Sheehan Disability Scale (without/with modification)n=23n=7n=24 n=0n=47 n=7
BIID disrupts work (mean – range) 6.6 (1–10)1.6 (1–3) 5.7 (1–10)-6.1 (1–10)A
BIID disrupts social life 6.0 (1–10)1.3 (1–2)5.8 (1–10)- 5.9 (1–10)B
BIID disrupts family life 5.8 (1–10)1.9 (1–3)4.9 (1–10)-5.4 (1–10)C
BIID disrupts personal happiness 8.7 (3–10)1.6 (1–4) 7.8 (1–10)- 8.2 (1–10)D
Treatment (n – (%))
Professional help sought 15 (50.0)9 (37.5) 24 (44.4)
Psychiatric medication taken 9 (30.0) 6 (25.0)15 (27.8)
Psychological or behavioural therapy10 (33.3)6 (25.0)16 (29.9)
Surgical treatment7 (23.3)0 (0.0)7 (13.0)
Medication was helpful3 (33.3)2 (33.3)5 (33.3)
Therapy was helpful4 (40.0)2 (28.6) 6 (35.3)
Surgery was helpful 7 (100.0)-7 (100.0)
A(Mann-Whitney U=33.5, p,0.001).
B(Mann-Whitney U=27.0, p,0.001).
C(Mann-Whitney U=61.0, p,0.01).
D(Mann-Whitney U=7.0, p,0.001).
Body Integrity Identity Disorder
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The aetiology of BIID remains unclear. Congenital abnormal
body representation in the brain has been proposed [3,6,7,10].
Time of onset (usually from as early as BIID individuals can
remember), similarities with somatophrenia, and persisting exact-
ness of line of wished amputation are arguments for such a deficit.
The preliminary finding of absence of activity in the right superior
parietal lobule when stimulating the affected body area may
supports this [10,30]. Arguing against is the change in affected body
part and intensity over time in some BIID individuals, but this does
not exclude a neurological cause with certainty. We hypothesize a
multigenic origin of BIID and have recently initiated molecular
studies using next generation sequencing techniques.
Strength of the study is the presentation of somatic, psychiatric,
social and BIID characteristic data of a large group of BIID
individuals, including the paralyzation variant. Some limitations must
be noted. The major limitation of the study is the lack of in person
structured interviews and physical examinations of the participants.
BIID is a rare and extremelysecretive condition,which forms a major
individuals. To generate a sample of sufficient size, we decided to
restrict communication through the internet. Indeed, it has been
Study participants had to answer questions written in English while
this was not always their mother tongue. We allowed them to answer
the open questions in their mother tongue however. Moreover, as
BIID is rare and highly secretive, we cannot exclude with certainty
that there is no overlap between cases reported in literature and the
present study participants. For the paralyzation variant we do know
these have not been reported, and results in this group and in the
amputation variant are very similar which adds to the reliability of the
results. Lastly, due to a limited sample size and widespread origin of
the participants, results should be generalized only with caution.
BIID is a rare, infrequently studied and highly secretive
condition in which a mismatch between mental body image and
Table 3. Somatic and psychiatric aspects of 54 BIID individuals as self-reported in questionnaires.
Amputation (n=30) Paralysation (n=24)Total (n=54)
Height in cm (mean – range) 179.8 (167–198)178.8 (163–196)179.3 (163–198)
Weight in kg (mean – range) 83.6 (59–122) 77.8 (54–122)81.0 (54–122)
Body mass index (mean – range)25.9 (19–37) 24.2 (16–40) 25.2 (16–40)
Head Circumference (mean – range)57.0 (50–61)57.6 (55–60) 57.3 (50–61)
Handedness (n – (%))
-Right handed22 (73.3)22 (91.7)44 (81.5)
-Left handed6 (20.0) 2 (8.3)8 (14.8)
-Ambidexter 2 (6.7)0 (0.0) 2 (3.7)
Abnormalities of the affected body part(s)*
Feels different inside 12 (40.0) 12 (50.0)24 (44.4)
Feels different if someone touches12 (40.0)10 (41.7)22 (40.7)
Feels different when temperature changes 3 (10.0)8 (33.3) 11 (20.4)
Medical problems 7 (23.3)5 (20.8)12 (22.2)A
Neurological problems (n – (%)) 3 (10.0)4 (16.7)7 (13.0)B
Cardiovascular abnormalities (n – (%)) 1 (3.3)1 (3.3)2 (3.7)C
Pulmonary abnormalities (n – (%))4 (13.3)3 (12.5)7 (13.0)D
Gastrointestinal abnormalities (n – (%))4 (13.3)1 (4.2)5 (9.3)E
Other abnormalities (n – (%))5 (16.7) 5 (20.8)10 (18.5)F
Psychiatric co-morbidity (lifetime) (n – (%)) 7 (23.3)11 (45.8)18 (33.3)
Mood disorder 6 (20.0)7 (29.2)13 (24.1)
Anxiety disorder 1 (3.3) 1 (4.2)2 (3.7)
Psychotic disorder0 (0.0) 1 (4.2)1 (1.9)
Eating disorder0 (0.0) 2 (8.3)2 (3.7)
Back Anxiety Inventory (mean – range) 14.7 (6–35)15.7 (6–35)15.1 (6–35)
Beck Depression Inventory (mean – range)11.7 (0–40) 14.3 (0–42)12.9 (0–42)
Adapted version of the Y-BOCS (mean – range)13.7 (8–18) 12.8 (10–16)13.3 (8–18)
*Part(s) of the body BIID individuals wish to be either amputated or paralysed.
A4x fractures to arms/legs; 1x spinal fracture; 1x restless toes; 1x spinal compression; 1x knee injury; 1x morton’s neuroma; 2x muscle problems; 1x diabetic neuropathy.
B5x lumbar hernia; 1x muscle spasms; 1x fibromyalgia;
C1x heart attack; 1x valve problems;
D1x asthma; 2x bronchitis; 4x pneumonia;
E1x stomach problems; 1x pancreatitis; 1x cholangiolithiasis; 1x colitis; 1x appendicitis.
F1x lower back pain 1x lipomata; 1x spinal fracture; 1x hypothyroidism; 1x scoliosis; 3x diabetes; 1x immune depression; 1x renal colic; 2x intersex condition (one
ambiguous genitalia, surgically corrected; other male genitalia but female identity).
Body Integrity Identity Disorder
PLoS ONE | www.plosone.org5April 2012 | Volume 7 | Issue 4 | e34702
the physical body influences lives of affected persons in an extreme
way. BIID results in an intense desire to amputate a major limb or
severe the spinal cord in order to become paralyzed and may lead
individuals to self-inflicted mutations. For affected individuals,
BIID desires are essential to life and not the result of major somatic
or psychiatric morbidity. Further research is warranted to reveal
the aetiology of this condition. Physicians need to be aware of
BIID when meeting someone with a wish for unusual body
modifications. Careful discussions of this desire are essential. Next
to surgery there is no effective management strategy at present but
the sheer acknowledgment of and respect for the desires of BIID
individuals may decrease the huge burden of BIID on their lives.
Questionnaire Body Integrity Identity Disor-
Adapted version of the Yale Brown Obsessive
We thank all participants of the study for their openness and willingness to
share information about BIID and their feelings with us. We kindly thank
Dr. A. Mazaheri and V. Gugliemi for carefully correcting language errors.
Conceived and designed the experiments: RB DD RH. Performed the
experiments: RB. Analyzed the data: RB. Contributed reagents/materials/
analysis tools: RB. Wrote the paper: RB DD RH.
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