I first met Natalie at the Global Genes Patient Summit last year. Within minutes I had fallen in love with her. Her smile, her optimism, her energy – they are contagious, and I was not alone in either wanting to be her friend or wanting to help her achieve her goals. Everyone loved Natalie.
At that conference, her first, it was obvious she was going to change the way people would view rare disease patients. She had that gift.
Natalie had lipodystrophy, a rare disease in which people do not properly create adipose tissue. Like many lipodystrophy patients, she appeared to be very healthy, but the disease is a silent killer. While she spent most of her life trying to understand her condition, it wasn’t until she was well into adulthood that she received a diagnosis. By then, the disease had taken its toll internally, ravaging her heart.
Her diagnostic odyssey is in the video clip below:
And it can be seen in the video, she was born to be a rare disease advocate. Her sunny disposition and humor are quite clear on screen, as they were in real life. Her short time in the rare disease community energized many, and in her passing, many are devastated.
Like most of Natalie’s friends, I often thought my relationship with Natalie was special; we all felt that way. Her entertaining Facebook posts about perseverance, food, pugs, and grandchildren were interspersed with posts detailing the many visits she made to the emergency room. And all of her posts were written in a style that let me think she was just writing to me. She had that gift.
Even when her heart was failing her and she patiently waited for a transplant, she kept everybody informed while still making us smile. Her optimism was contagious. We all thought she would make it until a heart became available. Unfortunately, that was not meant to be.
My condolences to Natalie’s family, her friends, and the lipodystrophy community. You have lost a one-of-a kind individual. We should all try to follow her lead and remember to enjoy life. That is what Natalie would want.