I wish others knew that...
What is one thing you wish more people knew about living with a rare disease?
how lonely and wearisome it can be if you have a disease or diseases which keep you pretty much homebound and you don't have anyone living with you or a caregiver coming in to help you some of the time. Thank heavens for Jesus!
Its very fatigued
It changes day to day. Sometimes minute to minute.
That they actually hear snd understand and remember!
