Personal Experience with Ankylosing Spondylitis May 4 is World Ankylosing Spondylitis (AS) Day. About one in hundred in a population suffers from AS. Males are more prone to AS than females. If not properly treated in time, it may severely impair one’s life. As an AS patient myself, I thought to share my own journey […]
This poem is a mother’s tribute to her son Sandeep. Senthi Meenakshi is a special mother and her poem creatively captures Sandeep’s life through film titles.
Aarika was diagnosed with brittle bone disorder, Osteogenesis imperfects at the age of five months.
My Body. My Enemy. I decided to come out of grief and actively work on my health. I went on a gluten free, sugar free diet from August 2019 and am feeling much better. I am on a low dose of medication and plans to get off fully with diet and exercise. Huma Ismail, December […]
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.
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.
Patient Voices 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 […]
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.
Zoyeb’s story of living with Spinocerebellar Ataxia Zoyeb is a very friendly person, full of humor and laughter. A gamer (play stations), foodie and football fan. Thanks to his friends and his cousins he goes regularly for movies, football matches and attends all functions. The support he has received from family, friends and communities has […]