Myelodysplasia. Problems of long-term survival and social function

Problems of ninety-eight patients with myelodysplasia, ages 13 to 72, were reviewed. They were grouped as follows: Those having thoracic and high lumbar level (L(2) upward arrow) lesions and confined to wheel chairs, those with intermediate paralysis (L(3-5) nerve roots) as walking with aids and those with less paralysis (S(1) downward arrow) as fully ambulatory. Fifty-two percent of the L(2) upward arrow and only 15 percent of of the less severely paralyzed patients were retarded below an IQ level 70 (P<0.01). Thirty-six patients (62 percent) were fully and 26 partially, but appropriately, self-sufficient. Thirty-six patients were found in some form of dependent care. Two of the 71 more paralyzed patients (L(3-5) and L(2) upward arrow) and five of the 28 S(1) downward arrow patients were "naturally continent" but reported stress incontinence of urine. Thirteen of 23 female and five of 28 male patients between ages 16 and 72 years reported sexual activity and accounted for 17 normal offspring. All 23 retarded patients were in some form of custodial care. Dependency among the normal intellect patients could be attributed to neglect of physically deforming complications and emotional disorders, primarily low self-esteem centering around social and sexual identity problems associated with excrement soiling.