My symptoms began at age 12. I was misdiagnosed and untreated until I was nearly 21 years old. December 1998, I was diagnosed with Periodic Paralysis with the possibility of Renal Tubular Acidosis. Although I do suffer from Nephrolithisis, it was later clinically confirmed that I have Familial (Primary) Hypokalemic Periodic Paralysis. I am a "textbook" case with the exception that my condition has progressed more quickly than average. My MD physician considers me permanently weak in my 30's. I am never well-functioning as I do not fully recover between attacks.
Finding proper medical care has been next to impossible and a terrible experience over the years. I am thankful to
finally have the attention of the Muscular Dystrophy Association and a team of physicians 3.5 hours away in
Jackson, Mississippi. I am still looking for a local physician that will
work with them and me to provide acute care and maintenance. No luck so
My mother and her sister have some of the symptoms, but have not pursued
a diagnosis and are uninvolved in my care. I do not have children and
can't have them. In spite of that, I hope to be able to have
genetic testing done someday. As of today, I do not have the resources
to do so.
I strive to bring awareness so that future patients don't endure the hardship that
I have. The physical and emotional effects of this disease are
beyond expression, especially when support is so hard to come by. It
should not be this way, and I intend to make Periodic Paralysis not only
known, but well understood.
Thank you for being here.