Autoinflammatory diseases are a group of rare illnesses that cause recurrent episodes of fever and inflammation resulting from inappropriate activation of the immune system. While some have unknown causes, autoinflammatory diseases are often caused by genetic mutations. Symptoms include acute episodes of fever and other symptoms such as joint pain, rash, sores in the mouth, enlarged glands or abdominal pain, depending on their underlying illness.
The Autoinflammatory Diseases Clinic at Boston Children’s Hospital, part of the Rheumatology Program and led by Dr. Fatma Dedeoglu and Dr. Jonathan Hausmann, is a leader in the diagnosis and treatment of autoinflammatory conditions. Although we don’t have cures for these diseases, our goal is to put each child’s condition into long-term remission by providing ongoing treatment.
Over the last 20 years, significant progress has been made in identifying and treating patients with these conditions. Interestingly, the study of these rare diseases has helped us to better understand how our immune system normally works — and how it goes astray. Research into these illnesses has also revealed significant gaps in our understanding of the immune system and has challenged doctors and researchers from across the world to find answers to these tough questions.
While each autoinflammatory disease is different, they have in common that stress (either “good” stress from birthday parties or travel, or “bad” stress from final exams) often triggers disease flares. Which is why, in addition to treating these conditions with medications, it is essential to improve a patient’s ability to manage stress. Our clinic has been collaborating with social worker Nikki Tennermann, LICSW, to enhance psychosocial supports for families. We recently held a family event, Managing Your Autoinflammatory Disease: Lifestyle and Management Workshop, focused on wellness and psychosocial management of autoinflammatory conditions.
A few key takeaways from the event:
- Wellness is an important component of treatment. Regular physical activity including reiki, yoga and graded aerobic exercise can be very beneficial to children with autoinflammatory diseases.
- Art therapy using a variety of artistic mediums can be used to explore coping and adjustment to conditions, particularly as autoinflammatory conditions are prevalent in early childhood.
- Connecting with other families is key. Events are a great way for families to ask questions and share tips, like how to work with schools to develop 504 plans and how to stay connected to groups like the Autoinflammatory Alliance.
During the workshop, a mother shared her personal journey of raising a child with a periodic fever syndrome. She told a story about Valentine the Bear, who got an injection and band-aid before every one of her daughter Julia’s daily medication injections. Julia, her family and Valentine are joyful and resilient amidst the uncertainty of autoinflammatory conditions.
Contact Boston Children’s Rheumatology Program for information on future events focusing on emerging medical and psychosocial interventions for children with rheumatic conditions.