How palliative care can help people facing Eosinophil-Associated Disease
If you have been diagnosed with Eosinophil-Associated Disease (EAD), you may already be dealing with difficult physical symptoms as well as uncertainty about how the illness might affect your well-being. Pain and stress can be major barriers to continuing to live a fulfilling life. Palliative care is a medical specialty designed to help you with these obstacles right now.
The goal of palliative care is to improve quality of life for both the patient and the family. It is provided by a specially-trained team of doctors, nurses and other specialists who work together with your doctors to provide an extra layer of support. It is appropriate at any age and at any stage of EAD, and it can be provided along with curative treatment.
In all ways, your palliative care team helps you to better cope with the challenges of EAD. Here are some of the ways it can help today:
Understanding your illness
Palliative care specialists help you to understand complex medical information. They spend time with you to help you match your treatment options to your personal needs and goals.
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.
Treating your physical symptoms
“Patients with EAD 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 can also help you gain the strength to carry on with daily life. It improves your ability to tolerate medical treatments.
Tackling the stress
Dealing with the symptoms and the uncertainty of your illness can be frustrating. Some patients feel stressed or even depressed as they manage the ups and downs. Palliative care treats your emotions by teaching you coping skills and helping you manage your fear or anxiety. Palliative care has been shown to make a big, positive difference in how you feel.
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
For More on EAD
The American Partnership for Eosinophilic Disorders has more information about EADs for patients, caregivers, health care providers and researchers at www.apfed.org.