Let's Talk: Profile: Matthew Tillyer

Several years ago, Kristen and Michael Tillyer were a normal working couple with two active boys. Like most families, their days consisted of juggling careers, homework deadlines and extracurricular activities. Then, their lives and priorities dramatically shifted when their oldest son, Matthew, experienced unusual neurological symptoms following a severe case of bacterial pneumonia. A once-energetic athlete, Matthew was suddenly on death’s door with no diagnosis or treatment plan in sight.... more

Product Guide

A Patient’s Guide to Nonprofit Support

Patients living with rare diseases need a variety of people on their healthcare and support teams to help them navigate the ups and downs of symptoms and treatment strategies. Statistically, these patients are not alone; more than 30 million Americans have been diagnosed with some type of rare or chronic illness. But, that doesn’t mean having a diagnosis isn’t extremely lonely, and knowing where to seek help when problems arise can offer tremendous peace of mind.... more

Ask the Experts

Reader: Can IVIG cause swollen and painful joints?

Michelle and Leslie: There are many things that can reduce the side effects you are experiencing. First, discuss with your physician whether switching brands might improve your symptoms. Also, you can pretreat prior to receiving the infusion to lessen its side effects. A third option is to consider switching to subcutaneous IG infusions, which might minimize some of the side effects you are experiencing.... more

Meet the Staff

Cheryl Brooks
Assistant Editor

Abbie Cornett
Patient Advocate

Advisory Board

Bob Geng, MD, MA
Assistant Professor, Division of Allergy & Immunology
University of California, San Diego

Erika Lawrence, PhD
Associate Professor Department of Psychology University of Iowa

Todd Levine, MD
Director, Department of Neurophysiology Good Samaritan Hospital, Phoenix
Assistant Professor of Clinical Neurology University of Arizona

Fred Modell
Co-founder of the Jeffrey Modell Foundation

Marc Riedl, MD, MS
Associate Professor of Medicine Division of Rheumatology, Allergy & Immunology University of California, San Diego

Patient Advocate

Ask the Experts – Get answers from experts about issues related to immune-mediated diseases?

Advocacy Groups – Living with a chronic illness? Reach out, seek help and find a community.

Take Action – Everyone can advocate for healthcare treatment and reimbursement issues.

Share Your Story – Help others by sharing your experience with chronic illness!

Reader’s Online Forum – Have your questions answered immediately from experts, through this live interactive forum

Disease States