personal stories

People from MDA's SMA community share their experiences in an effort to raise awareness of the disease and its effects

posted on August 29, 2013 - 10:37am
The experiences of people with spinal muscular atrophy (SMA) teach and help raise awareness about the disease, and are inspiring — and often entertaining — as well. For a wealth of personal stories, anecdotes and perspectives about transitioning to adulthood with a muscle disease, check out the MDA Transitions Center blogs penned by members of MDA's SMA community:

In the 1970s, Elyse Bruce saw her teenage brother deal with MG — but in the 2000s, she struggled to find a diagnosis for her young son’s mysterious symptoms

posted on June 25, 2013 - 11:42am
I was a pre-teen in the 1970s when my older brother began having problems. My parents thought he was just hitting those teen years when rebellion is the word of the day. He went from being an excellent clarinetist to a mediocre one, and the more he practiced, the worse he sounded. He would get up from the supper table and fall into the wall; my parents asked him straight out if he was on drugs.

Carmelita Pallares, 31, of Albuquerque, New Mexico, finds ways to conserve precious energy so she can care for her toddler daughter

posted on June 25, 2013 - 11:37am
My name is Carmelita Pallares. I am Native American; I am a member of both the Navajo Nation and Santo Domingo Pueblo tribe. I am 31 years old. I was diagnosed seven years ago with myasthenia gravis, only three months after having emergency surgery and undergoing a temporary colostomy following an accident. My neurologist believed that the trauma my body suffered from this accident and the stress...

Rachel Pegram, 38, of Charlotte, N.C., shares her experiences and advice after 25 years of living with MG

posted on June 25, 2013 - 11:28am
I never expected that my life would change at 13. It was at age 13 that I got a bad case of chicken pox. Shortly thereafter, my arms and legs started not working right. I couldn’t climb the school bus stairs or lift my arms to brush my hair. In 1988, after a bad tumble down the school stairs because my legs gave out on me, my parents took me to see a neurologist.

Three individuals share their experiences with the ups and downs of myasthenia gravis

posted on June 25, 2013 - 11:00am
Autoimmune myasthenia gravis is an unpredictable disease. On the one hand, it is a condition that can be effectively managed with medication and surgical interventions. On the other hand, even with treatment, symptoms may come and go, and treatments that once worked unaccountably may stop working.  To gain a personal perspective on life with MG, read: