Katrina Gossett knows the importance of gynecologic (pelvic) exams, but she is not eager to repeat her last exam experience.
Katrina Gossett, 29, has only had one gynecologic (pelvic) exam in her life, and it’s not an experience she’s eager to repeat.
For people fighting neuromuscular disease,“progress” is a word that describes encouraging advances in the search for treatments and cures. But it’s also a word that evokes the forward-looking perspectives and remarkable life journeys of those living with these diseases who meet extraordinary challenges.
Upon hearing my diagnosis — type 1 myotonic muscular dystrophy (MMD, or DM) — at the age of 20, I must admit, my world crumbled for a moment. I’ll never forget how the room seemed to shrink and spin, how the doctor’s voice morphed into white noise, and how visions of immobility caught my breath.
Letters to the Editor:
Adventures in parenthood
Editor’s note: In response to the summer issue of Quest’s cover story, A Dream Within Reach, about the challenges and rewards of becoming a parent when you have a neuromuscular disease, we received letters and comments online at quest.mda.org that were overwhelmingly supportive. Here are two responses:
What About My Disease?
Readers sometimes wonder what’s happening with research for their diseases when they don’t see news about them for a while in the pages of Quest. But keep in mind: Research that seems to be for one disorder often has spillover implications for others.
Whether you are newly diagnosed or have been living with a neuromuscular disease for years, there is arguably one guiding principle that is most important when it comes to making decisions about your care and quality of life: You are in charge.
And with good reason.
To people faced with life-threatening diseases, the U.S. Food and Drug Administration (FDA) can seem like an indifferent obstacle, keeping them from treatments that would otherwise be available. But the reality is much more layered and complex.
Each form of muscular dystrophy is devastating in its own way. For some patients, symptoms may manifest at birth or at a young age. My situation was different.
Abby Bronson is the Duchenne muscular dystrophy program manager at Children's National Medical Center in Washington, D.C., where she works with various stakeholders to further therapeutic development for this disease. Bronson has a master's degree in business administration from the University of Pennsylvania and has managed new product development and marketing at biotechnology and...