At 14 years old, Bede Marciari has experienced and missed out on a great number of things. For many people, this is just part of growing up. In Bede’s case, it includes all the challenges of growing up, but also of living with psoriatic arthritis. Before her condition, Bede commonly played tennis, and ran cross-country. Living with psoriatic arthritis, however, has mean Bede transitioned out of her school, and many of her favorite activities. She missed her school’s model UN last year – a moment she had been very excited about. Now Bede will have the opportunity to speak to the real UN as part of a group of young people sharing about noncommunicable diseases. Keep reading to learn more, or follow the original story with The Baltimore Sun.
What is Psoriatic Arthritis?
Psoriatic arthritis is a type of inflammation that occurs in patients with psoriasis. The psoriatic form of arthritis may affect any joint in the body. Most people develop psoriasis first and psoriatic arthritis follows. In some cases the joint issues may present ahead of the skin condition however.
Common symptoms of psoriatic arthritis include the characteristic red patches appearing on the skin, reduced range of motion, fatigue, and swollen fingers and toes. Psoriaitic arthritis is suspected to have some genetic component, however, the ultimate cause of the condition remains unknown.
Treatments often focus on NSAIDs, disease-modifying antirheumatic drugs, immunosuppresants, and TNF-alpha inhibitors. Steroid injections, and joint replacement surgeries are also potential options for treating the condition.
Between 4 and 80
Typically, psoriatic arthritis occurs in patients between the ages of 30 and 50. Bede Marciari received her diagnosis when she was in middle school. During the worst periods of her condition, Bede barely had the strength to get out of bed. She’d wake up about a dozen times each night as a result of medication. She passed the time with episodes of “Friends,” browsing Instagram, and learning calligraphy. She describes herself as a combination “between a 4-year-old, and an 80-year-old.”
Bede was fortunate in that she was able to continue taking classes via Skype while her condition confined her to bed. She’s also had access to some of her area’s best doctors, and her parents have jobs that allow them time off to help her get to appointments. Perhaps her greatest advantage in all of these things, however, is her attitude. Bede says her condition gave her a lot of time to think. She chose to embrace it with humor. Furthermore, she decided to help. Bede became an advocate and raised $16,000 this year for the National Arthritis Foundation.
On the World Stage
A positive outlook on the world and her condition, combined with her outspoken nature put Bede on the radar for Mychelle Farmer. Farmer works with a group known as NCD Child. It was Farmer that asked Bede Marciari to speak at the UN for her organization. Farmer describes Bede in impressive terms. “There are many adults,” she says “who have nowhere near the coping skills that this young lady has.”
Bede says it is her hope that by speaking at the UN she will convince doctors to pay more attention to children with arthritis. Even though her symptoms are improving, she admits the difficulties of her situation are challenging. She can only imagine how much more difficult it must be for children lacking her advantages.