All information below is from personal experience and from the APFED website on eosinophilic disorders. As with any health-related article, information below is not medical advice. Please seek the advice of your own doctor concerning any health problems.
White blood cells. Aren’t they supposed to help our bodies fight off infections and parasites?
What do you mean, my child has a health problem actually caused by something that is supposed to help him stay healthy?
What can we do to fix this problem?
These are the questions I was asking 5 years ago. If you are like me, you’d probably never heard of any disorder that includes the word “eosinophilic.” Well, all that changed for me in 2010 when my own son was diagnosed with a disorder called eosinophilic esophagitis (EoE).
Since it took a lot of work and seeing various specialists along the way to get properly diagnosed and find a treatment regimen that works for my son, now I take every opportunity I can to help spread the word about these disorders. In 2007, the House of Representatives passed HR 296, making the third week in May National Eosinophilic Awareness Week. So I am taking this moment to share with other parents about eosinophilic disorders. You can learn more by visiting the American Partnership for Eosinophilic Disorders (APFED).
What are eosinophilic disorders?
When a certain type of white blood cell, called an eosinophil, is found in higher than normal numbers, it can cause inflammation and damage in the part of the body where the eosinophils are concentrated. Symptoms are usually noticed in the gastrointestinal tract, but some types of eosinophilic disorders affect blood and tissue in other parts of the body. (Bet you might be wondering how to even say that “e” word. E-O-sin-O-fill-ik — those capital letters are long vowel sounds).
Other facts about eosinophilic disorders:
- Eosinophilic disorders can affect anyone, regardless of age, race, or gender.
- There is no cure, only a few treatment options that include elimination diets and special elemental formula that contain amino acids. Sometimes feeding tubes become the only way for nutrition to be provided to the body.
- People can go undiagnosed for years, due to lack of awareness of these diseases.
- Diagnosis and specific name of each disorder depend on where the eosinophils are found (esophagus, colon, stomach, blood, tissue, etc.).
- The abundance of the eosinophils cause inflammation and damage to the area they occupy.
- Symptoms can include: (click here for a more detailed list)
- food impaction (when food gets stuck in the esophagus)
- failure to thrive
- difficulty swallowing
- chest pains
Before having a child with two eosinophilic disorders (esophagus and colon), I was never aware of this disease. Now that I know, I’ve learned of so many other people who suffer from similar disorders. Many of them are right here in Columbia. Some of us travel down the road to Charleston for care, and others go as far as the children’s hospital in Cincinnati, Ohio. As parents of these children, we will go to the ends of the earth to help our children grow and live as comfortably as they possibly can.
Having a child with an eosinophilic disorder also comes with a huge cost. It leaves us drained financially, physically, and emotionally. Yet we still have hope, and we still try to help our son enjoy all the things in life a “normal” person does, with the exception of maybe eating. Seek out some of our stories, and learn what it is like to live this way. There are many videos and stories that can be found on APFED’s site.
Do you or someone you know suffer from an eosinophilic disorder? How has it affected your life? What words of advice would you share with other families?