EHLERS DANLOS SYNDROME AND THE MEDICAL GASLIGHTING OF WOMEN
The recent editorial by Suzanne O’Sullivan “We Are Turning Too Many People Into Medical Patients” WSJ March 17 is of great concern to those of us who endeavor to come to the aide of patients suffering from Ehlers-Danlos syndrome (EDS). EDS was discovered over one hundred years ago and not a recent,1990, malady as suggested in this essay. The reason for the increase in patients labelled with EDS is that physicians are finally beginning to become familiar with this disease because of its devastating impact which goes ignored for decades. The average EDS patient suffers for over ten years before the diagnosis is made. The patient described by Dr. O’Sullivan fits the criteria for hypermobile EDS. Hers is not psychosomatic. It afflicts 2 million people in the UK, 10 million people in the USA, 17 million in Europe and 250 million worldwide. Historically there has been little knowledge of this disease amongst professionals and sorry to say little interest. The patients are not taken seriously.
Sixty percent of the population are hypermobile but only three percent will develop EDS. To suggest to the patient that they have EDS simply because they are hypermobile is wrong. Overdiagnosis is unforgivable. In that I agree with Dr. O’Sullivan. I diagnose EDS when my hypermobile patients experience debilitating complications such as mast cell activation, POTS, or gastrointestinal problems.
A genetic marker would be of great value but as yet has not been discovered. This could be remedied by interest and research.
The fact that Dr. Sullivan’s patient has psychosomatic seizures is not a surprise. Most patients with EDS have a psychiatric component to their disease. There are several factors that lead to psychiatric issues in EDS. Some could be organic. Mutations of the MTHFR gene that control the production of brain neurotransmitters are being studied and may be responsible for some of the psychiatric issues as well as a cause of hypermobility. Not yet proven, but being studied.
However, an established factor for mental decline which reflects more on the medical profession is that these patients go for years being told their disease is all in their head. Like Ingrid Bergman in “Gaslight” they begin to believe it. The patients believe they are mentally ill. That is an egregious overdiagnosis.
The patients are sick, in pain and are not believed. The fact that the majority of the patients are women suggests the long-held belief of gender discrimination in healthcare.
These patients are young and deserve to be examined with a clinical lens and not the Gaslight. Research and awareness is needed to help these young women.
Most of my patients with EDS were accomplished athletes and did not spend time sitting down once their disease was diagnosed. They only stopped when their joints were badly damaged from a delay in diagnosis and proper physical therapy.
Editorials such as that written by Dr. O’Sullivan only perpetuates the problem and are very disaapointing.
