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My Daughter’s Erythromelalgia Diagnosis Changed Her in an Unexpected Way

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Pain doesn’t define who you are, but it can mold you in unexpected ways. I’ve seen it happen to my daughter, Lynn, and it’s only been a year since she was diagnosed with erythromelalgia. The “man on fire” condition has brought the best out of her.

I can count and list many limitations and struggles she faces daily. I can also describe her pain and even make a graph of her pain level over the past year because I’ve got it all written in a daily journal.

But I won’t.

I can write a list of things she can’t do anymore.

But I won’t.

I can recount the many questions and worries she has on her mind and on my mind, too.

But I won’t, either.  

However, I do want to share with you the positive change she has experienced over the past year. It’s hard to believe there can be a positive outcome from such a painful disease — something no doctor could have accounted for — and I certainly haven’t been taking notes. But it’s definitely something hard to miss.

Through this disease, Lynn has learned a lot about herself. She has gained strength to face the daily pain and uncertainties. My heart aches to see her physical limitations, but she acquired another level of discipline where she has to accommodate certain environments and give up certain activities and replace them with others.

Lynn has learned to plan her day according to the level of pain she has or would have. Although being a sensitive and caring girl has always been one of her most prominent qualities, she has become even more compassionate to others. Her circle of interest in people who are facing challenges and pain has expanded.

Prior to her diagnosis, her main concern was about family, friends and the small social circle she was exposed to. However, flash forward one year and she wholeheartedly cares about people she’s never met in real life — people facing all kinds of diseases. Her compassion is so limitless, and her mind is always racing to find ways to spread joy help others, and she amazes me with some of her ideas.

So far, she has donated her long beautiful hair to cancer patients, and on her ninth birthday, she donated all of her gifts to children with special needs. Lately, another one of her ideas is to use her singing to spread joy on social media sites by dedicating songs to others who happen to be facing a challenging time. I believe it’s her way of feeling helpful to others within the capabilities of her young age. I also have to admit she’s got a talent when it comes to her choice of lyrics and music.

When I’m frustrated and struggling to accept the reality of her disease, she calms me down and gives me hope when she tells me that one day she will become a scientist and find a cure to erythromelalgia. I can’t but believe the sincerity in her voice and the determination in her eyes. She has already made up her mind that once she finds a cure, it will be for free and she wants to travel the world to give it to others. Sounds like a plan to me! That’s my girl, the girl on fire, my warrior princess.

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Lead photo by Thinkstock Images

Originally published: December 1, 2016
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