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Sunday, March 29, 2020

Celebrate Rare Disease Day in Muscatine

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Margaret Stadtwald
Margaret Stadtwaldhttps://discovermuscatine.com
Margaret Stadtwald works as the Editor of Discover Muscatine Newspaper.

MUSCATINE, Iowa—When many people think of Feb. 29, they think of Leap Day. However, for those with uncommon medical conditions the day has more significance. Feb. 29, also known as Rare Disease Day, gives those living with less common conditions an opportunity to share their stories and find support for discovering cures.

Several years ago, Stephanie Curry, of Curry’s Auto Incorporated, started experiencing unusual symptoms. She began developing unexplained tumors that caused her a lot of pain. The pain increased when she exercised, sometimes making her feel nauseated.

Naturally concerned, Curry made several emergency room visits and went to many doctors to try to find answers. All seemed confused about her symptoms and some even doubted they existed at all, making it even more difficult for her to get an accurate diagnosis.

Eventually, Curry traveled to a doctor in Arizona who diagnosed her with Dercum’s Disease or adiposis dolorosa. An exceptionally rare condition, Dercum’s causes benign fatty tumors to develop below a person’s skin. The tumors cause widespread pain that worsens with movement.

The Dercum’s Disease awareness ribbon

Dercum’s currently has no specific treatment, and people with the disease, such as Curry, manage it by taking pain medications and engaging in less strenuous kinds of exercise. For Curry, receiving a diagnosis and starting pain management has made a remarkable difference. When Curry first began experiencing Dercum’s symptoms, she had so much pain that she could not walk her dogs. Now, she can manage her condition well enough that she can enjoy walking them around her neighborhood again.

As someone with a rare disease, Curry hopes that everyone will take Rare Disease Day as a time to become more understanding of other people and their experiences, especially because many people with rare diseases do not have easily noticeable symptoms. “You don’t always know what’s going on behind the scenes,” she emphasized. By taking a little time to learn more about rare diseases, Curry believes everyone can, “be more understanding.”

Curry also encourages anyone who would like to go a step farther in supporting people with rare diseases to donate to the National Organization for Rare Disorders (NORD). A non-profit group, NORD provides information about many rare diseases, including Dercum’s Disease, it helps connect patients with treatment, supports research efforts, and advocates for people with rare diseases. To learn more about NORD or to donate to them, visit, https://rarediseases.org/.

In Muscatine County, many people like Curry manage rare diseases every day. Take time on Feb. 29 to recognize them and to help them find cures for their conditions.

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