Congenital Generalized Lipodystrophy

Years ago, I published my story, “When a Stranger In a Bookstore Mistakenly Assumed I Had an Eating Disorder” in which I recounted an uncomfortable confrontation in a Barnes and Noble bookstore. I explained how a stranger approached me, attempting to persuade me to seek support for my eating disorder. I was so flustered and [...]

Kara Felton was sitting on a bench at the playground, watching her son, Julian, play. Upon spotting a free patch of wood chips, 3-year-old Julian decided to explore. This, however, was unacceptable to another 3-year-old playing nearby. Little did Julian know, this other kid had claimed that foot-wide section of wood chips for himself, and [...]

Upon seeing an individual with lipodystrophy, you will be able to tell that something is amiss. Since lipodystrophy is a rare disease caused by a loss of fat cells, the clearest symptom is a “different” physical appearance. Some of those struggling with lipodystrophy may have a complete, generalized loss of subcutaneous fat, while others may [...]

I was in Barnes and Noble during winter break, shopping for journals and activity books, because I am a college student too broke to go on vacation. I find Barnes and Noble a place of peace—I love being surrounded by books, avid readers, Starbucks, and puzzles. It is a store of people looking for an escape [...]

Today is World Lipodystrophy Day. Lipodystrophy is a rare, progressive, multi-system disease that involves lack of adipose tissue (i.e. subcutaneous fat under the skin). People are often trying to lose fat, so lipodystrophy sounds kind of cool, right? Actually, not so much. In fact, it turns out that fat does a lot of good things [...]

So, you have a friend with a rare disease. Maybe this illness is invisible and your friend looks like your average person, but physiological differences influence the way they walk, talk and sleep. Maybe the illness is fully evident by different physical characteristics, or presence of a wheelchair, crutches, intravenous wires or breathing tubes.  You may be [...]

There are days when I go about life, ignoring all of my troubles. I ignore them because it is not necessary to bring my insecurities into consciousness. I get on the college shuttle to go from campus to campus, and feel just like one of the crowd. I am simply another one of the 40,000 [...]

My sweet Alani was born in January of 2014. She is the baby out of five children, and the only child born with an incurable rare disease. Just over 5 pounds, she was so small and frail, but so beautiful. She had an awfully large belly, being so new. I noticed she had two hernias in [...]