您有什么建议可以提供给马德隆畸形的新患者?

查阅其他马德隆畸形患者给予马德隆畸形新患者的建议

原本


Research, research, research! Learn about it and educate yourself because you'll be more comfortable living with it and being able to tell people about it when you have the information. People will listen and people do get curious because it is rare and it is something most haven't heard of so they will definitely listen to you when you want to talk about it. Something I would have done differently is probably start a journey on finding people with the same deformity as me because the more I learn about it the more I want to hear people's stories.

翻译