The Autoinflammatory Diseases Clinic (AIDC) at Boston Children’s Hospital specializes in the diagnosis and management of patients with diseases of autoinflammation and immune dysregulation. The clinic, established in 2014, is one of the few centers in the country that specializes in the care of patients with these complex diseases.
Inflammation is a natural response of the body to infection or trauma. In those with autoinflammatory diseases the immune system is dysregulated, and it triggers periodic or chronic bursts of inflammation, leading to fevers and other symptoms. Many of these diseases are characterized by recurrent fevers, rashes, and pain in joints, muscles, the chest, and the abdomen. There is evidence of systemic inflammation on blood tests, and infectious work up is negative. In some autoinflammatory diseases, broader dysregulated immune response is present; in that case signs and symptoms of autoimmunity, allergy, and/or immunodeficiency can be seen in one condition at the same time.
Most autoinflammatory diseases are genetic (inherited), start in childhood, and persist throughout adult life. Some diseases can be seen in several members of a family. Other autoinflammatory diseases appear to be acquired, perhaps due to the interplay of genetic and environmental factors, and they can present at any time during childhood or adulthood.
The key principles of the Autoinflammatory Diseases Clinic (AIDC) are:
- Collaboration: Physicians at the AIDC work closely with other specialists such as gastroenterologists, immunologists, otolaryngologists, infectious disease specialists, pulmonologists, hematologists, neurologists, geneticists, dermatologists, and nephrologists to provide the needed comprehensive care to patients with autoinflammatory diseases.
- Evidenced-based medicine: Diseases of autoinflammation and immune dysregulation are rare, and new subtypes are described every year. We seek to stay current with the scientific literature and approach treatment options with an appreciation for the underlying cause of a disease, to the extent that it is known.
- Individualized care: Because autoinflammatory and immune dysregulation diseases are rare, there may or may not be a standardized treatment for a condition; we therefore consider patients on an individual basis and adjust care based on patient and family preferences and response to treatment. We are building a registry of our clinic patients for systematic, longitudinal follow-up, which will help us to better understand and monitor these rare conditions.
AIDC runs one half-day per month. Fatma Dedeoglu, MD, and Jonathan Hausmann, MD, staff the clinic every month. In addition, rheumatology fellows and residents with an interest in autoinflammatory diseases are welcomed to participate in seeing patients.
Goals of the Autoinflammatory Diseases Clinic
- to provide comprehensive, state-of-art care to patients with these conditions
- to develop of diagnostic and treatment protocols in collaboration with national and international groups
- to integrate clinical research into the clinic
- to build partnerships with local communities to educate in the recognition and management of patient with these conditions through community outreach programs
- to serve as an educational center for medical trainees to learn about these diseases
Questions to ask your doctor
You and your family play an essential role in your child’s treatment. It’s essential that you share your observations and ideas with your child’s treating physician so that you have all the information you need to fully understand your child’s disease and their treatment recommendations.
It’s often helpful to jot down your thoughts and questions ahead of time and bring them and a notebook to your child’s appointment. If your child is old enough, you can also encourage them to write down questions.
Initial questions to ask your child’s doctor might include:
- How did you arrive at the diagnosis of SAID?
- Are there any other conditions my child might have instead?
- Does my child require further testing or procedures, such as blood, urine, or genetic testing?
- How should I care for the fevers at home?
- What activities should/shouldn’t my child participate in?
- Should my child’s diet change?
- How should I talk to my child about this condition?
- Will my child have kidney damage?
- Will my child grow out of SAID on her own without treatment?
- How can I tell if my child’s SAID is getting better or worse?
- When can I expect my child’s SAID to go away?
- Is my child’s SAID contagious?
- Can my child go to school?
- What treatments are you recommending and why?
