I wish others knew that...
What is one thing you wish more people knew about living with a rare disease?
Listening to sufferers of rare diseases is important, not just hearing but listening. The isolation we feel because we suffer from an issue you may have never heard of is real. We are coping as best we can, but everyone needs help to keep it up.
, great points, thank you for sharing! We're glad you're here to share support with others. Are you feeling supported by the community? - Warmly, Donna (Team Member)
There are definitely times where just having a friend spend time with you. No drs appts, nothing you need done, Just someone to curl up with you in bed and watch some movie. Just a friend to hang with for awhile..
How bad the fatigue is, and this is not because I have done too much.
, yes! Fatigue related to chronic conditions/illness is SO much more than just feeling a little tired. And taking a nap doesn't necessarily fix it, either.
Best, Erin, Team Member.
That symptoms can change daily and one day you may be able to do something that you canāt do another day
, yes! Wouldn't it be nice if others were more aware of this fact?
Thanks for joining the conversation!
Best, Erin, Team Member.
