As part of our vetting process for Arthritis by the Numbers – a collection of verified arthritis facts and figures – we invited patients to comment on the disease section that most affected their lives. After all, they are the experts on how the disease changes and challenges everyday living.
Meet Liz Morasso, a licensed clinical social worker at UCLA’s department of radiation oncology who has volunteered for the Arthritis Foundation since 2002. That’s when, at age 16, she was diagnosed with systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA). Over the years, she has immersed herself in leadership roles with the Foundation and speaks nationwide to inspire patients living with chronic illness.
Following, in her own words, is Liz’s story about living with these conditions and how the statistics she reviewed in Arthritis by the Numbers relate to her personally.
Liz: Being female and having SLE and RA rang true. More adult women are diagnosed with these diseases than men. My symptoms began in middle school, mostly depression and fatigue. I felt isolated, and my emotions and physical state were unpredictable. Even though I was active in afterschool activities, like the swim team, my fatigue was constant, and I started to develop joint and muscle pain.
About a month before my diagnosis, I jokingly told a friend, “It feels like I have arthritis.” She thought I was kidding – after all, kids don’t get arthritis. Not long after that, my Spanish teacher recognized my malar rash. The school nurse found that I had a fever, and my joints, muscles and lymph nodes were swollen and sore. I was referred to a pediatric rheumatologist.
Another fact that stood out to me was the number of patients who develop SLE before the age of 18. In my work with different arthritis groups, I am seeing more and more patients who are teenagers and young adults. The number of patients in this age group is rapidly growing. I hope better access to care and understanding of rheumatic disease will help them experience relief and support like I did.
Question: What changes has your arthritis made to the way you live?
Liz: It can be challenging to explain my disease in a way others can understand. This disease sometimes still feels like it is something for older people. I thought it was rare for young people to feel the way I felt. Initially, I was afraid to meet others who had RA or lupus.
Because my doctor was so involved with the Arthritis Foundation, she talked about ways it could help me. My friends and family also wanted to be supportive and help in fundraising and events. I started meeting others my age with the same experiences. They became my support network – my go-to for social engagement and information. I became a JA camp counselor. I’m glad I did, because it helped me meet people and find resources to help me cope and adjust to my “new” life.
Question: What advice would you give to a newly-diagnosed patient or parent/caregiver?
Liz: The turning point for me was connecting with fellow patients through the Arthritis Foundation. Connecting made me feel validated. The Arthritis Foundation has helped me build my toolbox – forming relationships, sharing information and helping me navigate difficult systems and live the most meaningful life. Connecting helped me feel less isolated and more normal. Being part of this community is important for a variety of reasons. It empowers you and those who love and care about you to find control.
Question: What are the questions we can’t answer yet, but you would like researchers to focus on?
Liz: I can’t overemphasize the emerging young adult piece in this. Adolescents and young adults want to see themselves represented more in research as a separate category. Young people cope differently and go through complex developmental stages and transitions. That is often missing in the programming and literature they are reading. This group’s unique experiences are something the arthritis community should be more mindful of, whether it’s research, patient care or policy.