WASHINGTON

2023 A Week of Love Recipient, Presley Lucas 

Presley Lucas is a freshman this year. Those of you who know Presley know her love for God and her passion for sports. She loves playing softball and basketball and enjoyed running track. Presley is also a top student in Gifted and Talented, junior NHS, and FCA.

Last spring, she was hit with an invisible illness that took several months of doctor visits and endless tests. She struggled to get out of bed, which was not like Presley at all.

Finally, after months of searching for the cause, answers came. A Name to what was causing Presley to even struggle with regular daily activities. Juvenile Dermatomyositis (JDM). Once her family had the diagnosis, they thought, “no problem, we will start medication and get back to normal life.” That has not been the case. Presley struggles with daily muscle pain and fatigue; she has headaches, stomach pain, nausea, and tachycardia (heart beating fast). During these episodes, when they are severe, she is unable to attend school in person.

Juvenile Dermatomyositis is a rare autoimmune disease affecting 3 out of 1 million children yearly. JDM causes her body to attack itself, primarily muscle, connective tissue, blood vessels, and skin and can attack the organs. Each case is different, and each child responds differently to treatments.

Currently, there is no cure for JDM; the medication can manage symptoms. The hope is that the proper medication regimen can put her into remission. The timeline varies for each individual. Presley has gone through the protocol treatment options for her autoimmune. These medications have many side effects. Prednisone, which most of you know is a steroid, is recommended at high doses for extended periods to try to calm down the inflammation she is experiencing, along with immunosuppressant medications; these medications are intended to reduce the inflammatory response and help her body to stop attacking itself. These medications have also caused physical changes and made her feel bad. Presley started her first IVIG infusion (purified antibodies) this January in hopes this treatment will give her some positive results and allow her to regain her strength and return to school regularly. This treatment is monthly and is a process that generally takes 4-5 hours but sometimes can take up to 8 hours. Due to the medications, her doctor appointments are more often than once a month. She must constantly be monitored for side effects and progress, which takes time and, unfortunately, money.

Studies show that some mild cases can see remission as early as 1-2 years, but others can take up to 8 years or longer. Some patients do not achieve remission, which is why it is so important to stay on top of this now so that Presley can get the help she needs in hopes that she will not have to fight this for the rest of her life.

Through all this, of course, the main concern is getting Presley in better health so she can do the things she loves again, but also now have the mission of bringing awareness to this rare autoimmune disorder and helping others get a diagnosis early on and appropriate treatment as well as supportive care.