Caitlin was always a busy nurse, so much so she struggled to make time for her own chronic diseases adrenoleukocytosis and aplastic anemia. She opens up about her own journey today so that others will learn the resources that are out there, and how to advocate for their own best care options. “I was an […]

Michael and Ashlee Cramer have a unique mother-son relationship. They share a podcast about their cancer journey. They have a website and a YouTube channel, and they even do rap songs about their hospital experiences together. But let’s go back. Ashlee was a dancer on tour in France when she met her future French husband […]

I’d love for lawmakers to know that we need affordable healthcare options that cover those of us who are too healthy for disability but sometimes too sick to work. Living with a chronic illness can be a fulltime job in itself. Past denial of medication coverage has greatly and frequently impacted my treatment decision. For […]

I am a rare disease patient with multiple diagnoses and still no underlying condition. I spent quite a few years in advocacy and have an overall sense of the health care system that many patients do not have but struggle still with my own self worth, despite my successes. I’ve had to pass on medications […]

I am a fourth-year medical student at Tulane University in New Orleans. Originally from Virginia, I went to UVA for college and afterwards gained a unique experience as an intern in a pottery studio for a year. I’ve had the opportunity to participate in longitudinal events with Crohn’s and Colitis such as advocating in front […]

Diagnosis When I was diagnosed with Lupus, I had never heard of the term before and did not even know to be worried. I had no idea how life threatening this disease could be. I had no idea how isolating it could be, and that it would change the course of my life. I was […]

The pain of feeling helpless first with his son’s diagnosed illness and pain and then the misconduct of his son’s health insurer was more than he could stand. Something wasn’t right While in high school our son began to have stomach and bowel problems. But it wasn’t until shortly after his high school graduation that […]

Summary: Andrea was diagnosed with Grave’s and Thyroid Eye Disease (TED) in 2016. It took her almost seven years to regain her health and get her life back on track. Thanks to new treatment options and therapies she is now able to live her best life. The journey to get there however, was not an easy one. She has lived through the pain, frustration, confusion, and loneliness that are all associated with a disease diagnosis. She shares her story today to help others along their journeys and bring about meaningful change.

And the health professionals that got me there… It all started in 2018, at the end of my senior year of college. I was accepted to graduate school and enjoyed my final school days by going out with my friends. At this time, I was very grateful for what life had to offer, and I […]

I am the Executive Director + CEO of the TED Community Organization, a 501c3 for all those affected by thyroid eye disease. I am very fit, healthy and highly energetic with a passion for my husband and Siamese, Sweet Pea. I also own a website design & photography agency since 1998. I am currently in […]

The Diagnosis Journey Megan recently graduated, married, and started a rewarding career when she was diagnosed with a primary immunodeficiency disease called Common Variable Immune Deficiency. While her new diagnosis posed challenges and struck at an already hectic time, Megan felt fortunate she was diagnosed relatively quickly and that there was treatment available. At the […]

My journey to diagnosis with primary immunodeficiency (PI) truly began when I self-referred myself to an allergist/immunologist. After multiple visits and tests, I learned that my body does not produce the antibodies that others have to help fight common skin and respiratory infections. Like many patients with PI, I was often sick with sinus infections, […]

Bright, colorful, zest-for-life Amanda had been seeing a neurologist for pinched nerves, and none of the standard treatments were helping. This prompted a deeper look with x-rays, which revealed the source of her extreme and constant pain, multiple sclerosis (MS). Like so many people diagnosed with a chronic, autoimmune condition, Amanda had no idea what […]

My Hidden Battle with IBD For many years after I was diagnosed – I hid my diagnosis. I wanted to keep it tucked away. It was my way of keeping it separate from the best parts of my life. Over time, it became impossible to keep the IBD separate from the rest of my life […]

Symptoms and Darkness In March of 2022, I started to experience some concerning symptoms. I had extreme fatigue, joint pain, weakness, swollen fingers, stiffness, headaches, and more. It was my senior year of high school, and I was taking college classes. The fatigue was so debilitating it was challenging to finish all of my school […]

The Infusion Access Foundation Advocacy Team arrives on Capitol Hill in Washington, D.C. today on Thursday, April 27 for our first ever Hill Day! We are bringing along seven star advocates from across the country to advocate for the infusion community. We plan to have a full day of meetings–talking to key members of the […]

Previously diagnosed with Rheumatoid Arthritis (RA), Juana was still feeling really ill. She went to her doctor, where her blood was drawn and she was told to go home because, “she didn’t look sick.” Her labs would be ready the next day, but something inside told Juana to stay and demand her lab results that […]

My name is Nicole Wilson, and I’m a member of the primary immunodeficiency (PI) and rare disease community in Pittsburgh, Pennsylvania. As a mom of a very active and energetic little girl and German Shepherd, when I’m not involved in dynamic discussions and reenactments of unicorns and princesses, or playing fetch; I enjoy yoga, meditation, […]

Most people don’t consider minor irritations like aches, pains, or itches a reason to go to the doctor. Matthew, a highly active hiker, didn’t think twice about his itchy scalp, a “normal” condition that comes and goes. “You don’t think that is anything serious,” Mattew said. And really, why would you? But the truth is […]

Regina’s Stand Against Step Therapy Finding the right treatment for chronic disease can take years of suffering through symptoms. When patients and their doctors do find the treatment that works, the worst thing that can happen is losing access and being back at square one.  After three stable, healthful years using Rituxan to manage lupus […]

Jarrad was just 12 years old when he was officially diagnosed with Crohn’s disease. Now in his 40s, he has been managing this disease for most of his life. When he was first diagnosed, the treatment options were much more limited, and what his doctors recommended didn’t work to alleviate his symptoms. Growing up with […]

In July of 2017, Peter Morley gave himself an unusual birthday gift: a trip to the United States Capitol. As the country awaited the Senate’s vote on the “skinny repeal” of the Affordable Care Act (ACA), Peter made the first of many trips to Washington D.C. to share his story and highlight the importance of […]

Lyndsay Carder has a talent for making things beautiful. After nearly a decade of battling a variety of health issues that culminated in a diagnosis of Hashimoto’s disease, a chronic autoimmune disorder in which the immune system attacks the thyroid, Lyndsay has found some balance between family and her need for creative expression. A mom […]