While we may have enough clinical information about rare diseases, it is equally important to listen to the life stories of people with rare diseases. Life stories are patient voices of what it is like to live with a rare disease and face everyday challenges.
Patient voices chronicle their experiences and give us an idea of the nuances and many complexities of living with a rare disease. How do our communities react to people with rare diseases? Are they included in all life activities? How does family support enable and empower? What should our communities be doing for people with rare diseases? These are the many questions that life stories raise and it is interesting to see how each individual and his/her family and friends cope with the issue and support the person.
Patient voices are a symbol of courage and serves to inspire all of us to push beyond all boundaries to achieve the best we can with whatever limitations.
A doctor’s personal experience with Ankylosing Spondylitis
Personal Experience with Ankylosing Spondylitis May 4 is World Ankylosing Spondylitis (AS) Day. About one
Flickering Memories and Emotions of Huntington Disease
Just a small poem I wrote previously about the disease, a way I let my emotions out as I’m not very good at opening up.
Mighty Aarika. Mighty Inspiration.
Aarika was diagnosed with brittle bone disorder, Osteogenesis imperfects at the age of five months.
My Body. My Enemy.
My Body. My Enemy. I decided to come out of grief and actively work on
My horror with Transverse Myelitis
It is now nearly 2020 and I have somewhat recovered from TM. I go out on the road and walk. I go out to our family shops and sit for a few hours and work. No I can never really be that body building types gymming in those Cure Fits or whatever. Nor can I run some marathon or jog. It is now fine for me.
My story with Osteogenesis Imperfecta
I have Osteogenesis Imperfecta (also known as OI), a condition that causes brittle or fragile bones and possible hearing loss, brittle teeth (Dentenogenesis Imperfecta), short stature, physical deformities.