Caroline is the adorable three-year-old daughter of Kevin and Kelly Brennan Culver, and she was diagnosed with juvenile dermatomyositis (JDM) about a year ago. This means that she requires an infusion every four weeks. Caroline hates the procedure, and she uses her strength and bravery to endure it every time. Now, her mother is inspired by her journey and will tell her story through a book.
About Juvenile Dermatomyositis (JDM)
Juvenile dermatomyositis is a rare form of dermatomyositis that sees inflammation of the blood vessels, skin, and muscles. Most patients see the onset of symptoms between ages five and ten, although others do not notice symptoms until their fourth or fifth decade of life. Females are twice as likely to be affected than males. Looking towards the cause, we see that medical professionals are unsure as to what leads to JDM. They suspect that the immune system mistakenly attacks the body, however. Regardless of the cause, symptoms include skin rashes, muscle weakness, voice changes, difficulty swallowing, lung problems, fatigue, stomach ulcers, weight loss, fever, muscle pain, intestinal tears, and hardened deposits of calcium under the skin. There is no cure for this condition, and treatment is intended to improve muscle function and lower inflammation in an effort to prevent disability. Doctors will often prescribe corticosteroids, methotrexate, or immunoglobulin.
Caroline’s Story
The first symptoms that her parents noticed were rashes on her face and knees, issues with swallowing, and trouble holding her head up at times. At first, it was dismissed as allergies or eczema. It was not until a routine visit with the dermatologist over a toenail that someone diagnosed the condition. The doctor labeled Caroline’s case as “textbook JDM” and opened the world of rare diseases to the Culvers.
Immediately after the diagnosis, Caroline’s mother searched online for any information that she could find about JDM. In an effort to connect with other JDM patients and families, she posted about her situation on social media as well. It turned out that Caroline’s preschool teacher has a daughter impacted by JDM, leading to a connection between the families.
Telling Her Story in a Book
One of the issues that Caroline encountered was an understanding of the infusion process. Not knowing what the doctors were doing made the entire situation scarier. To educate others on this treatment so that they wouldn’t face the same problem, Caroline’s mother began posting online about the entire process.
The response was immediate and positive; people loved it. It was this response that encouraged Kelly Brennan to write a book about infusions. Titled Caroline’s Infusion Day, the 32-page book is set to drop this summer. The Culver family hopes to educate those around them about the treatment that Caroline must receive every four weeks.
Looking Forward for Caroline
Doctors, along with the Culver family, are hoping that they will soon be able to extend the amount of time between infusions. They all applaud Caroline’s strength and are excited that she’s responding to treatment.
Kelly Brennan thanks the team of doctors that works with Caroline, along with a special thank you to her family. They help on every step of the journey, making sure that Caroline is taken care of and that her parents get some time to relax.
Hopefully the Culver’s work to raise awareness and tell Caroline’s story will help others. Find more about their story here.
