Have Pain? Are You Crazy? Rare Diseases Pt. 2 - Ehlers-Danlos Mention
Since then, Chick has traveled cross-country for care. She went to one inpatient rehabilitation unit where she says the therapist initially took her crutches, threw them across the room, and told her to go get them. Surprisingly, she seems less angry with them than I might have expected, as the intensive physical therapy did result in her regaining her ability to walk. The following year, the RSD spread to her other knee, and she was hospitalized again at a different rehab center. By this point, she had also developed symptoms of postural orthostatic dizziness and tachycardia (POTS, or Postural Orthostatic Tachycardia Syndrome) and dysautonomia (a malfunction of the autonomic nervous system that can cause unstable pulse and blood pressure, leading to fainting spells and GI symptoms, among other). ). These symptoms were explained away as anxiety and the possibility of conversion disorder was again raised, rather than their looking for a medical explanation.
Hearing Sick Chick’s story, I wondered if, had she ended up at Boston Children’s, she would have ended up on the locked psych ward because her parents, too, could have been accused of “doctor shopping” and medical child abuse.
Instead, Chick finally kissed the right frog, and found her prince—a caring, observant physician, who made the correct diagnoses, finding that she has Ehlers-Danlos syndrome (EDS), historically viewed as a connective tissue disease causing extremely hypermobile joints, but now known to be far more complex. She is now getting appropriate therapy for her CRPS, EDS, and other associated syndromes.
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As an EDS patient, I can relate.