Neonatal-Onset Multisystem Inflammatory Disease (NOMID)

Understanding Neonatal-Onset Multisystem Inflammatory Disease (NOMID)

Neonatal-Onset Multisystem Inflammatory Disease (NOMID) is a rare, severe and chronic inflammatory disorder, usually occurring within the first three months of life, and is a part of a family of disorders known as Overlapping Phenotype of Chronic Inflammatory Disease (OPCID). NOMID leads to recurrent swelling and inflammation of multiple organ systems, including the skin, joints, respiratory system, central nervous system, eyes, gastrointestinal tract, and heart. It is thought to result from abnormally active inflammation and immune responses in the body. NOMID is caused by mutations in the NLRP3 gene. This gene codes for a protein that helps regulate the body's response to infections and other triggers. Individuals with NOMID can experience a range of symptoms, including skin lesions, fever, joint deformity and pain, headaches, vision difficulties, cognitive impairments, chronic fatigue, and, in some cases, signs of growth retardation.

Treatment of NOMID

Treatment for NOMID focuses on managing the symptoms and reducing inflammation. Treatment includes corticosteroids such as prednisone, nonsteroidal anti-inflammatory medications, and immunomodulating treatments such as anakinra (Kineret). In severe cases, chemotherapy or other immunosuppressive drugs may be necessary. Other therapies that may be beneficial in managing symptoms include physiotherapy, occupational therapy, speech therapy, diet modification, and lifestyle changes.

Living WithNOMID

Living with NOMID can be challenging, but there are steps that can be taken to help manage the condition. It is important to follow individualized treatment plans under the care of a doctor familiar with NOMID. It is also important to keep track of changes in symptoms or flare-ups, as well as any side effects from medications. Additionally, it can be helpful to have a support system to provide emotional support, and to reach out to organizations that offer information, education, and support for individuals with NOMID.

Coping Tips

  • Maintain a regular sleep/wake schedule.
  • Get regular exercise to improve symptoms.
  • Stick to a healthy diet.
  • Limit stress and negative emotions.
  • Manage fatigue effectively with rest and relaxation.
  • Practice stress management techniques such as deep breathing or yoga.
  • Take medications as prescribed.
  • Keep a symptom diary to identify triggers or flare-ups.
  • Reach out for support from family and friends.