Eosinophil-Associated Disease and Palliative Care
Understanding Eosinophil-Associated Disease (EAD)
White blood cells called eosinophils (pronounced “ee-oh-sin-oh-fills”) are an important part of your immune system that helps fight infections or diseases. However, when they appear in higher levels than normal without a known reason, they can cause eosinophil-associated diseases. This can mean inflammation and damage to the tissues in the area(s) affected. Eosinophil-associated diseases (EAD) are rare, but they are chronic and symptoms may be debilitating. EADs often result in missed time at school and work. They can greatly impact a person’s quality of life.
There are many kinds of EADs. Diagnosis is based on the part of the body that is involved, such as the digestive system, tissues, organs or blood. The most common are eosinophilic gastrointestinal disorders (EGIDs), which can affect one or more parts of the digestive system. Symptoms of EGIDs can include difficulty eating, nausea, diarrhea, vomiting, abdominal pain and fatigue.
Eosinophil-Associated Disease (EAD) Symptoms and Treatment: How Palliative Care Can Help
Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.
Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with your other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.
Symptoms of EAD vary based on the part of the body that is affected. For example, if the lungs are involved, you may have difficulty breathing and coughing. When the bladder is affected, you may have pain when urinating and you may feel the need to urinate frequently. Because every case is different, experts say that it all starts with understanding your illness and medical history.
“All patients should have a thorough history that addresses symptoms of organ involvement, medical conditions, exposures, over-the-counter remedies, travel, foods, occupational and recreational exposures and prior eosinophil counts,” says Dr. Andy Esch, a palliative care specialist who has seen many EAD patients.
Once you and the palliative care team have a complete understanding of how your symptoms are affecting your life, these specialists will help you understand your options for treatment. They will also help you talk to your other doctors about your choices and build a plan for your care.
“Patients with EAD also often experience fever, weight loss, fatigue, rash/pruritus, shortness of breath, gastrointestinal symptoms and pain,” says Dr. Esch. “Palliative care clinicians assess the sources of suffering in people with EAD, and they work closely with them and their family members to treat these issues.”
Palliative care also helps you gain the strength to carry on with daily life, and it improves your ability to tolerate medical treatments.
Aly’s Palliative Care Story
Twenty-three year old Aly Becker is a college student who lives with EAD. Aly sees palliative care for her chronic pain and discomfort as well as stress. Her palliative care team helps her set goals for herself—both short term and long term—so that she is still able to participate in social activities and attend band marches and performances.
“It’s all about trying to find those ways to make your life important. And palliative care has been huge in getting me to see those parts of my life and how important they are. Palliative care has helped me to feel like I can take control back from a situation I had no control over,” said Aly.
Serving as a mediator between different specialists is a common role for palliative care teams, but for Aly, whose diagnoses have changed over the years, this was essential.
“I think palliative care gave me that voice because I needed that. Whatever I said, they had my back,” said Aly.
How to Get Palliative Care
If you or a loved one with EAD needs palliative care, ask your doctor for a referral – the earlier the better. You can receive palliative care in the hospital and often in the community, including at home. Palliative care can ease many of the burdens of the disease and help you achieve the best possible quality of life.
For more information about EADs for patients, caregivers, health care providers and researchers, visit the American Partnership for Eosinophilic Disorders