患者/家属

患者/家属

与ECD共处可能充满挑战。这是一种复杂的疾病，会以多种不同方式影响患者及其家人。我们认为，应对ECD的最佳方式之一就是尽可能多地了解相关知识，并 参与其中 in the care of the patient. Some data found on the internet about ECD is out-of-date. The knowledge about ECD and the treatment options available for ECD patients are increasing at a rapid rate. As a result, patients are doing much better now than they did just a few short years ago.

寻找一个 护理中心 to manage ECD treatments is very important. Many patients are seen at an ECD Referral Center where the staff is interested in ECD research and where multiple patients are treated by a team of physicians. Most patients also maintain contact with a local physician to monitor their day-to-day health. This works best when the referral center and local physicians communicate and collaborate to ensure the best care of the patient.

有些患者发现自己无法工作。在这种情况下，患者通常需要申请 残疾津贴. 不同患者符合不同项目的申请资格。联邦层面设有相关项目，有时各州也会提供相关项目，ECD患者可能符合这些项目的申请条件。 在申请残疾福利时，由患者的主治医生出具一份详细说明——阐述ECD如何影响患者以及为何导致其无法工作——将大有帮助。此外，在申请残疾福利时提交患者的关键医疗记录也至关重要。这些记录应能证明ECD的病变情况及其对患者的影响。.

我们鼓励患者及其家属积极参与早期儿童发展全球联盟（ECDGA）的工作。这是学习新知识并结识其他ECD患者及其家属的绝佳途径。.