Tag: rare disease

There is a misconception that having a rare disease gets easier the longer you have it. In…

Never let anyone dis your ability to make the right choices regarding your child’s disabilities. ~Lisa Thornbury

I’ve had people think that changing my food and/or diet will completely “cure” my rare disease, which…

People that don’t have to live day-to-day with multiple, rare, chronic and degenerative diseases like I do…

Our society thinks it takes a special kind of person to care for someone with a rare…

Some believe that those who share the same rare disease can be treated the same, but that…

These people that are pitied or being asked to suffer in silence don’t want to suffer, don’t…

In my daily life, being one-in-a-million is rare – but stopping to take the time and share…

I want the general public to know that rare diseases are not contagious. But I want people…

If you live with a rare disease, know it does not define you. Live and manage the…