These days, the word “vacation” takes on a whole different meaning for the Tiffany family. Trips to Disneyworld have been replaced with trips to Bethesda, Maryland so that two of the Tiffany girls, Natasha, 17, and Cassandra, 13, can participate in studies at the National Institute of Health. Both girls have recently been diagnosed with juvenile arthritis, but their situation is a bit unique from other kids with JA—each has a twin sister without the condition.
As if travelling with four teenagers isn’t stressful enough, managing Natasha and Cassandra’s health challenges can make family trips even more difficult to navigate, says the girls’ mother, Adeliza. While, Nikita, 17, and Elinor, 13, can go all day like energizer bunnies, their sisters’ conditions make it nearly impossible for them to go a few hours without taking a nap or break. This is very new territory for the family, especially for Natasha, who was once a star soccer player and had hopes of joining the military.
For years, Natasha had periods of knee and hip pain, but as a competitive student athlete, her pain didn’t seem out of the ordinary. It wasn’t until she sustained a hip injury from a soccer tackle, and started to experience debilitating pain in her hands, that she saw a doctor for her symptoms. At first, even Natasha’s doctor wrote off her pain as a result of her active lifestyle and passion for drawing, but a trip to the hand orthopedist confirmed that she had JIA, the most common form of juvenile arthritis. Since her diagnosis in July 2014, Adeliza explains that “the kid [Natasha] was two years ago is very different from the kid she is now,” and says it’s a struggle for her daughter to get through an entire day without pain and fatigue.
For Cassandra, diagnosis happened a little differently. A self-admitted clumsy child, she preferred participating in band to playing sports, so her symptoms went largely unnoticed. Then, her mom noticed that pinky finger was more swollen and irritated than usual. Also, her coordination seemed to be getting worse. So, during one of Natasha’s trips to the doctor, Adeliza asked a question that confirmed her worst nightmare: Cass also likely had JIA. Looking back, Adeliza regrets not seeing the signs sooner—bulging joints, stiff walking, the persistent clumsiness—but says that her daughter “never once complained about the pain,” so it never occurred to her that something might be wrong.
For Natasha and Cassandra, managing their symptoms is also complicated by the fact that neither of them can tolerate steroids for pain management. They, and their doctor, are still figuring out which biologics works best for them, and each has her own set of unique health problems which make pain management even tougher. Natasha also has fibromyalgia (a chronic arthritis-related condition that causes widespread pain and fatigue), polycystic ovarian syndrome (a hormonal disorder that causes enlarged ovaries and other symptoms) and suffers from frequent migraines. Cassandra has had recurrent respiratory infections since she was an infant, as well as Cushing’s Syndrome (a disorder that occurs when you have higher than normal levels of the hormone cortisol) that developed as a result from taking inhaled steroids as a child.
Now a high school senior, Natasha faces an additional challenge: deciding where she should go to college while still learning how to manage her disease. A talented artist and aspiring med school student, she’s considering an undergraduate degree in medical illustration. The challenge? Her school of choice is in Richmond, Virginia, several hundred miles away from her rheumatologist and parents in Texas.
Natasha says location is her main limitation when it comes to choosing the right school. Because cold weather makes her symptoms worse, “letters from schools in New York or Michigan get thrown into the trash without much more than a glance.” She also favors universities with a medical school so she might find an on-site rheumatologist, and prefers public schools because, unlike private schools, they are required to accept 504 plans for disabled students.
For 7th grader, Cassandra, graduation is still a ways to go, but talking to teachers and peers about her condition is a new learning process. Though their school system has been “overwhelmingly supportive,” Adeliza says there are times when her daughters just don’t get the attention they need.
That’s why meeting other kids with JA and attending programs like t Camp JAM are so life-changing, says Adeliza. The Arthritis Foundation’s Camp JAM, a 4-day, 3 night camp for boys and girls ages 8-17 with juvenile arthritis and other rheumatic conditions, teaches kids how to advocate for themselves as they experience arthritis-related challenges. It also gives kids a chance to meet others like themselves and build friendships that last a lifetime. Natasha has participated in camp for two years in a row and says she’s met some of her best friends there. She loves it so much she even plans on becoming a camp counselor next year when she turns 18.
For Cassandra, the best part of camp is that “you don’t have to explain the word arthritis to anyone.” No one asks why you have to take a break, or why you need help with something, they just get it. Even something as simple as having nap time on the schedule makes a world of difference, says Adeliza. It makes her girls feel normal, and like it is “OK” that they sometimes require a little extra down time. In some ways, nap time is just as important to her girls as all the other activities the camp plans, she jokes.
Keeping a sense of humor is one way Adeliza says her family copes with her daughters’ diagnoses. She says it’s better to just laugh it off when one of them has trouble opening something, or to joke with Natasha that she’s really “71 not 17” rather than dwell on their situation. That, and setting aside one-on-one time with her other daughters is key, she says. In fact, Adeliza plans “designated skip days” for Nikita and Elinor to make up for the time and attention their sisters receive because of their JIA. Nonetheless, she admits that aligning Natasha and Cassandra’s needs with the rest of the family’s is “a piece of the JA puzzle” she and her husband are still figuring out. Until then, Adeliza and her family will take on arthritis the only way they know how: with a little bit of wit, and a lot of patience.