Monday, February 4, 2008

Body Integrity Identity Disorder

There was an article in the last issue of Scientific American: Mind I have been wanting to discuss, but I keep getting sidetracked. So, I’ll return to it now before I forget about it. The article focuses on a disorder that is slowly gaining more attention from both medical professionals and the public. Once resigned to guests appearing occasionally on the Jerry Springer Show and often considered an urban legend, the affliction is now taken seriously and considered very legitimate. It has been termed body integrity identity disorder (BIID), and is characterized by an irrepressible feeling of dissociation from part of your body, along with a desire to have that limb(s) amputated.

If you have not heard of it, it may sound a little outrageous, but those who suffer from it appear to experience serious mental anguish. And it is far from simply a cry for attention, as some of these patients have drastically taken matters into their own hands to alleviate their distress. One such patient wanted to be rid of both legs. After a surgeon refused to comply with his wishes, he obtained 100 lbs. of dry ice and buried his legs under it for six hours. He then went to the hospital with legs so frozen the tissue soon turned black. Eventually the doctors had no choice but to fulfill his original wish, and amputate both legs for his own safety.

There is no consensus on why this disorder occurs, or how it should be treated. Some consider it similar to gender identity disorder, as both begin early in life and are centered around a desire to fundamentally change some part of one’s body. Others attribute it to the patient being raised in an environment where he or she received little love and attention, causing them to envy the sympathy amputees might evoke. Many believe there must be a neurological origin to such an overwhelming obsession.

That neurological basis could involve a distortion in body-mapping regions of the cerebral cortex. One such region is the primary somatosensory cortex, an area of the parietal lobe to which sensory information of touch is relayed from all parts of the body. Just anterior to (in front of) the somatosensory cortex is another body-mapping area, the primary motor cortex. This region is involved in movement, sending information on planned muscle activation throughout the body. Both of these areas are subdivided into sections that deal with each specific part of the body, creating “body maps” of neural activity in the cerebral cortex. BIID could stem from a lesion or other disturbance in one of these areas.

Unfortunately, it is still not known exactly what is happening in the minds of these patients, nor is there a protocol for how to treat them. Traditional psychiatric medications don’t seem to have any effect. Surgery to remove the limb(s) in question so far has been the only treatment that has shown consistent success. For obvious ethical reasons, most doctors refuse to participate in such surgery. Others have granted the surgery, however, and those patients who do undertake it seem to feel gratified and at peace with their bodies for the first time in years. The medical field is far from agreement on how the disorder should be handled, but hopefully as recognition of the legitimacy of BIID continues to grow, so will efforts to develop a suitable treatment.

For more information on BIID, visit www.biid.org.

3 comments :

Sean said...

BIID also characterises itself through a need to be paraplegic, or blind, or deaf, or other conditions.

The American Scientific Mind article, while good, presents a really superficial overview of the condition.

The "obvious" ethical problems aren't actually so obvious. Ethicists such as Bayne & Levy actually argue that offering surgery is a appropriate option.

The link to biid.org is somewhat out of date and doesn't have all that much information. You may be interested to find a collection of most of what has been written about BIID in medical or other academic journals on BIID-Info.org. You may also like to read a multi-authored blog by people who have BIID at transabled.org

Sean said...

hello again Marc,

there are more than one way to look at the Hippocratic oath, isn't there? If we take a very narrow view of "health=physical wellbeing", then, providing an elective amputation or spinal cord transection would indeed contravene the "first do no harm" rule. But it is more and more accepted that health is and should be viewed in a wholistic manner, of the balanced well-being of both body and soul. The romans introduced the concept when they said "mens sana in corpore sano". How can we then ignore the immense emotional anguish BIID sufferers are constantly undergoing?

Yes, there is room for ethical questioning, but anything more than a passing, and honest, evaluation should quickly reveal the only logical conclusion: the moral and ethical validity of surgery as a viable option for BIID is unassailable.

The equation would be tremendously different if there was indeed a less invasive solution available. But there isn't. My personal experience and anecdotal evidence revealed by dozens of other BIID sufferers shows that neither psychotherapy nor medication touch BIID in any significant way. Shall we refuse the only treatment known to work, under pretense that we *might* find a less invasive treatment down the road? Would you refuse a new chemotherapy to a cancer patient, because the secondary effect might be too great, and you might find a less damaging cure in ten years?

Anonymous said...

The doctor's oath is hippocratic.
Honestly, we're suffering.