EDS类型

数据集获取（Figshare）

• 源站标题：Types of EDS.
• DOI：10.1371/journal.pone.0307574.t002
• 发布日期：2024-07-25
• 文件数：1 个
• 文件总体积：5.63 KB
• 源站页面：https://plos.figshare.com/articles/dataset/Types_of_EDS_/26374059

命令行下载

curl -L -o "Table 2.xls" "https://ndownloader.figshare.com/files/47933502"

文件清单

• Table 2.xls（5.63 KB）

文件总体积 5.63 KB（源站 API 实测）。

数据加载示例（图像类）

from PIL import Image
import glob, os

files = (glob.glob(os.path.join(path, "**", "*.png"), recursive=True)
       + glob.glob(os.path.join(path, "**", "*.jpg"), recursive=True)
       + glob.glob(os.path.join(path, "**", "*.tif"), recursive=True))
print("图像文件数:", len(files))
img = Image.open(files[0]); print("尺寸/模式:", img.size, img.mode)

# torchvision Dataset 方式:
# from torchvision import datasets
# ds = datasets.ImageFolder(path)  # 要求 子目录=类别

目录组织与标注格式以源站说明和下载后实际文件为准。

数据说明

Introduction
Ehlers-Danlos syndromes (EDS) is an umbrella term for a group of hereditary connective tissue disorders usually featuring hyperextensible skin, easy bruising, poor healing, and joint hypermobility. According to international Ehlers-Danlos support groups, the average time to diagnosis of this rare genetic condition is 10–12 years. Consequently, the journey to diagnosis can potentially be traumatic. This pilot study aims to explore female patients’ journey to a diagnosis of EDS while living in Australia.
Materials and methods
Over six weeks, from January to February 2023, a survey was distributed on EDS social media platforms including Facebook and LinkedIn. Ethical approval was obtained through the Ulster University Institute of Nursing and Health Research Ethics Filter Committee (FCNUR). Thematic and statistical analysis of the anonymous data was completed during March 2023.
Results
152 women completed the survey. More than half of the respondents first noticed symptoms of EDS more than 15 years prior to diagnosis and more than three quarters of respondents received other diagnoses prior to their EDS diagnosis. Most respondents saw their general practitioner, a physiotherapist and/or a rheumatologist prior to being correctly diagnosed with the condition. While some respondents had positive experiences with these health professionals, many felt that they were not listened to and, after doing their own research, had to educate their health professional/s about EDS.
Conclusion
This pilot survey demonstrated that the journey to diagnosis of EDS for women in Australia is frequently long and traumatic. Participants indicated that more EDS education and training is needed for health professionals, especially GPs, to improve the diagnostic process.
Implications for practice
Participants called for their self-reported symptoms to be listened to by health professionals and to be met with empathy and an open mind instead of being dismissed. Additional education and training to health professionals about connective tissue disorders including EDS may aid earlier diagnosis in Australia.

许可

CC BY 4.0

引用

学术使用请引用 DOI 10.1371/journal.pone.0307574.t002（source: https://plos.figshare.com/articles/dataset/Types_of_EDS_/26374059）。