Rare and Complex Conditions

The Centers for Disease Control states that 6.2 million children currently have asthma. Of those, it is estimated that anywhere from 5-20% of them have severe, complex and/or difficult-to-treat asthma. We define difficult-to-treat asthma by the symptoms patients are experiencing. › Continue Reading

Today we’d like to raise awareness for a lesser known eosinophilic condition, eosinophilic gastritis (EG), one of a handful of eosinophilic gastrointestinal disorders (EGIDs). When families receive a diagnosis for any one of these EGIDs, it can be overwhelming for › Continue Reading

Dining out can be a relaxing, enjoyable experience. However, parents of children with celiac disease may have a different perspective. Some families may not attempt to eat out at all, while others may do it but find it incredibly stressful. › Continue Reading

Celiac disease is a tricky condition. It can take many years to get a diagnosis because it is often missed or mistaken for other conditions. The symptoms are quite vague and some people have no symptoms at all! The Celiac › Continue Reading

I was diagnosed with Crohn’s disease at the age of 15, but I didn’t let that stop me from chasing my dreams of playing collegiate soccer. After diagnosis, I continued to participate in sports and other physical activities just like › Continue Reading

What do all three of these people have in common? Former U.S. President Dwight D. Eisenhower American pop singer Anastacia Los Angeles Lakers forward Larry Nance, Jr. The surprising link between the three people listed above is that they all › Continue Reading

I’ve always known my daughter, Campbell, was one of a kind.  She had a full head of the most beautiful hair, big blue eyes, and a strong will from the moment she was born.  As soon as she entered the › Continue Reading

Before Mia’s Cleft Surgery We didn’t know she would have a cleft lip. When they put my daughter on my chest after birth, the first thing I saw was the triangular space that separated one side of her lip from the › Continue Reading

It took about 24 hours for the previous day’s events to truly sink into my seven-year-old son’s mind. I think the excitement – the pinch-yourself-is-this-really-happening kind of awe – was too much for him to believe in the moment. But › Continue Reading

I will never forget the day.  It was in February 2010. I was driving home after picking up my kids from school.  My phone rang and it was the call I had been anxiously awaiting. The doctor was calling with › Continue Reading

Today is “Rare Disease Day.” “’Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their › Continue Reading

Making decisions about college can be overwhelming for anyone. But if you have a chronic illness like Crohn's disease or ulcerative colitis, it can be particularly stressful. To help you prepare, our inflammatory bowel disease (IBD) team put together this › Continue Reading

Learning that your child needs proton therapy can be overwhelming. On top of mentally processing a child’s cancer diagnosis or new course of medical treatment, the logistics can be a lot to manage. The time commitment can vary but often › Continue Reading

In May of 2003, I was given a diagnosis that would change my life forever. One day I woke up a healthy and active 16-year-old girl, finishing my junior year of high school, preparing for a 10-day summer trip to › Continue Reading

As a child living with a congenital heart defect (CHD), I knew that I was different. I went to the doctor a lot more often than my friends did. I had scars all over my chest and back. My parents › Continue Reading

You don’t have to avoid traveling just because your child has Crohn’s or ulcerative colitis.  To help families prepare, our IBD team put this checklist together to help families when traveling abroad or here in the US. Maintaining your child’s › Continue Reading

Holiday menu planning can be challenging for anyone, but for friends and family members of kids with food allergies, it can be especially difficult.  So I reached out to my fellow dietitians in our allergy clinic to compile some allergy-friendly › Continue Reading

It never occurred to me that I wouldn’t be able to hold my daughter right after her birth. She was born nearly three months too early – and it was a whirlwind, emergent situation bringing a premature baby into the world. › Continue Reading

There is nothing worse than watching your child go through something excruciating and being unable to stop it. Sarhea’s Birth Story On a Tuesday morning, my daughter Sarhea (Suh-ray-uh) was born via emergency cesarean section due to her not responding during › Continue Reading

If you’re pregnant or thinking about becoming pregnant, you’ve probably heard how common premature birth is.  Every year in the United States, 380,000 babies are born prematurely, or when a baby is born before 37 weeks of gestation. This is › Continue Reading

I would like to start by saying congratulations! Preparing for a newborn baby is an exciting time in any parent’s life. Receiving the news that your baby has a cleft lip/palate can be overwhelming, but preparation up front can be helpful › Continue Reading

Lately our patients have been asking us more questions about supplemental or alternative IBD diets related to the management of the disease. Because of this uptick, I thought it might be helpful for families to read about the role alternative IBD › Continue Reading

My daughter Emma is a bright, funny and loving three-year-old girl. She’s also observant, quiet, and slightly reserved. And she has Trisomy 21 (Down syndrome), complete tracheal rings and laryngeal cleft. She’s taught me many lessons in her short life, › Continue Reading

You’ve just been told by your doctor that your baby has spina bifida. Between the tears you’re fighting back and the questions running through your mind, you’re probably scratching your head in confusion about all of this “spina-something” business. Spina › Continue Reading

Our identical twin daughters, Selah and Shylah, celebrate their second birthday today. And while this is an exciting milestone for any parent, it feels particularly victorious for us because our girls were born conjoined by the lower third of their chests to the navel, and shared › Continue Reading