​エーラス・ダンロス症候群の有病率が５千人に１人という説は間違えています

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今現在一般的に信じられているエーラス・ダンロス症候群の有病率が約５千人に１人という統計は間違えている可能性が高く、

実際の有病率は約５００人に１人（もしくはそれ以上）の可能性が高いことが発表されています。

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引用元：

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”It is estimated that the prevalence of hEDS to affect around 1 in 500 individuals, with varying degrees of severity and presentation.”

https://www.thenorrislab.com/research/ehlers-danlos-syndrome

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”The prevalence of joint hypermobility syndrome is estimated to be about 3%, based on a 2013 survey of 12,853 participants in the UK.1

Occasionally considered a milder variant of Ehlers-Danlos syndrome, Hypermobility Type, it is seen in up to 3% of the general population,”

https://www.amjmed.com/article/S0002-9343(17)30220-6/pdf

Joint Hypermobility Syndrome: Recognizing a Commonly Overlooked Cause of Chronic Pain Bharat Kumar, MD, Petar Lenert, MD, PhD Division of Immunology, University of Iowa, Iowa City.

1. Mulvey MR, Macfarlane GJ, Beasley M, et al. Modest association of joint hypermobility with disabling and limiting musculoskeletal pain: results from a large-scale general population-based survey. Arthritis Care Res (Hoboken). 2013;65(8):1325-1333.

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”Bluestein says that for many years it was thought that one in 5,000 people had Ehlers-Danlos syndrome. But she says the limited research that’s been carried out into the prevalence of hEDS suggests the true number of cases is “much, much higher” than that.

Bluestein points me to a 2019 study carried out in Wales – a country of 3.1 million people. An examination of primary care and hospital records from 1990 to 2017 found that one in 500 people there has either hEDS or joint hypermobility syndrome (a similar condition with a slightly different set of symptoms). She says it’s “a good study” but believes it’s still an underestimate. The Ehlers-Danlos Society says more population studies need to be done to give a more accurate view of its incidence elsewhere.”

https://edition.cnn.com/2022/12/24/health/hypermobile-ehlers-danlos-syndrome-health-hnk-spc-dst-intl/index.html

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”The study reported that either the diagnosis Ehlers-Danlos syndrome (EDS) or Joint Hypermobility Syndrome (JHS) was found in the healthcare General Practice or Hospital records of around 1 in 500 people in Wales. It concluded that EDS/HSD are not rare conditions.”

https://www.ehlers-danlos.com/society-responds-to-bmj-paper-on-prevalence/

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"The combined prevalence of HSD and hEDS is in the order of 1 in 600 to 1 in 900. "

https://www.ehlers-danlos.com/is-eds-rare-or-common/

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２０２４年３月に発表された日本ナショナル ジオグラフィックの記事では

「ウェールズの人口のうち５００人に１人が、関節過可動型または似たような症状が出る「過剰運動スペクトラム症候群（HSD）を患っている」と記載されています。

https://natgeo.nikkeibp.co.jp/atcl/news/24/022900119/?rss

https://news.yahoo.co.jp/articles/f519350a58209d9f4a0be3e8d491e59e6bef4a6c?page=2

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専門家の方々からもエーラス・ダンロス症候群と過可動性スペクトラム障害は診断を受けていなかったり誤診をされているので現在発表されているエーラス・ダンロス症候群の有病率は正しいものではなく過小評価されていると信じられています。

"Experts also believe that all these prevalence figures are underestimates because many people with EDS or HSD do not get diagnosed, or it takes many years to get diagnosed, or they are misdiagnosed with another condition."

https://www.ehlers-danlos.com/is-eds-rare-or-common/

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エーラス・ダンロス症候群の患者が診断を受けるまでにかかる年月は平均１４年ということです。詳しくはこちらのページをご覧ください→診断を受けるまでにかかる年数について

日本よりも情報が遥かに豊富な英語圏ですら診断に１４年を要し、２０名以上の医師の診察を要してしまう状況なのであれば、日本ではさらに時間がかかるということです。

診断までに時間がかかるということは診断を受けるべき患者さんが診断を受けていないということです。