Ehlers-Danlos Syndrome (EDS)

  • At the time of Jocelynn’s death, Christiane “CJ” Allison, Jocelynn’s 22-year-old mother, had been struggling with unusual health problems for years that had gone undiagnosed. Some of her siblings had (and have) similar symptoms of chronic pain, and easy joint dislocations and injury.
  • Jocelynn had been referred to specialists in an attempt to diagnose her own diverse and severe symptoms: hypermobility, full body hypotonia, megalencephaly with concern of hydrocephalus, slow weight gain - “failure to thrive”, and delayed gross motor skills. During her short life, Jocelynn had very frequent visits with doctors, a physical therapist, and a dietary counselor to help manage her condition. None of these professionals reported any suspicion of abuse. In trial, they would testify that her symptoms were not indicative of neglect or abuse, but instead of an undiagnosed medical condition.
  • A couple of months before she died, Jocelynn’s pediatric neurologist told her mother that he suspected the baby had a genetic condition, possibly a nerve or connective tissue disorder, and that he wanted to do extensive genetic testing. However, he was concerned about the potential of such tests to bankrupt the family. He advised her to apply for assistance to help pay for the very expensive testing, which she did. The application for assistance was still pending when the baby passed.
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  • In the year following her child’s death, Jocelynn’s mother was referred to a physical therapist for a chronic knee dislocation she had had for years. A former Mayo Clinic therapist, he informed her that none of her joints were normal, but instead were extremely lax and able to move in unhealthy ways with a condition he called hypermobility. He informed her that the degree of hypermobility and chronic dislocation she had was characteristic of some genetic connective tissue disorders. Her doctor subsequently referred her to the Mayo Clinic in Rochester, MN, where she was diagnosed with Ehlers-Danlos Type III, Hypermobility Type in 2009.
  • Ehler-Danlos Syndrome (EDS) is frequently a dominantly inherited collagen disorder, and multiple forms exist. In some forms, children of affected parents can have a 50% chance of inheriting EDS, and studies are not clear on whether multiple forms can appear in a single family.
    • CJ suffers from chronic fibromyalgia-like pain, joint hypermobility, easy bruising, chronic fatigue, accumulated injuries, and other complications.
    • CJ’s brother also has the severe chronic pain, spreading scars, hypermobility and frequent dislocations characteristic of the disease.
    • All of CJ’s siblings have varying degrees of hypermobility and other various symptoms associated with hypermobility including a younger sister who also has severe chronic pain.
    • “Familial hypermobility” is common in the family members of Ehlers-Danlos patients, and Jocelynn herself had been identified as hypermobile before her death.
  • EDS is a genetic disorder where the collagen that supplies strength to the body’s tissues is not made right. Affected people have lax and overly-mobile joints that dislocate easily. They also have tissues that injure easily and heal slowly. Some, like CJ, bruise easily. The disease is not degenerative in the normal sense, but people who have it tend to become more disabled as injuries accumulate.
    • During trial, the prosecutor asserted to the judge that CJ made up her illness as a defense tactic for the case, and accused her family of cooperating with the deception. He also called it a “rule out” diagnosis and stated it that therefore lacked enough substance and would “confuse” the jury. This, in spite of the fact that hypermobility, and tissue weakness and damage cannot be faked.
    • The trial judge ruled that no mention of the mother’s diagnosis could be made unless the defense called a witness who was an expert in diagnosing EDS. The defense had experts lined up for the trial to speak to the forensic evidence in the case. These people were familiar with the well-known effects of Ehlers-Danlos and could speak to it if called upon as part of their other testimony, but they were not diagnosing physicians. Subsequently the mother’s EDS diagnosis was ruled “too prejudicial to the defense” in spite of the fact that the baby’s health and undiagnosed condition would be discussed in great detail, and parental medical history is normally recognized as relevant information. One expert was flabbergasted when, after his testimony in Clayton’s defense, he found out about the mother’s condition. EDS causes body tissues to be weak and very easily injured, and the case rested upon the type and degree of injury observed forensically. However it should be noted that even without information about the mother’s genetic condition, national experts that testified at the trial said that they saw no evidence of abuse. Even the radiologist called by the prosecution did not believe he saw evidence of foul play.
    • The judge interrupted the testimony of Jocelynn’s treating neurologist when he started to mention the baby’s family, and cautioned him against any indication to the jury that Jocelynn might have had the same disorder that her mother is diagnosed with.

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