Hypereosinophilic Syndrome Resource - Living Healthy with HES

Signs & Symptoms

Organs in the body that are most commonly damaged by HES include the heart, central nervous system, lungs, skin, stomach, and intestines. The symptoms of HES will vary among people who have the condition.
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People with HES may have a broad range of symptoms including weakness, fatigue, cough, rash, or cardiac symptoms that can require different courses of treatment. Even though symptoms and treatment may vary for every individual, everyone with HES can benefit from following simple steps to stay as healthy as possible.

Actively manage your disease

If you have HES you are probably working with one or more doctors or caregivers who will be monitoring your condition, but there's an important role for you too. Learn more about your individual condition and what you can do about HES. Keep copies of your medical records. At each visit, ask your doctor about your eosinophil counts and keep track of the levels. Monitor how you respond to treatment, record any physical, mental and emotional changes and discuss these changes with your doctor.

Create a circle of support

HES is a rare disorder. Current estimates suggest that it affects between 2,000 and 5,000 individuals in the U.S. Find support from family, friends and within your community to help you manage your condition. In addition, there are several national organizations in the U.S. for people living with eosinophilic disorders. These organizations are helpful in connecting people with HES to information and support groups.

Listen to your body

The right combination of rest and exercise will be different for everyone with HES. You may experience some physical limitations, so it's important to listen to your body. You should also talk with your doctor to determine how much exercise and rest are appropriate for you.

Make time for your emotional needs

With any chronic disease, it may seem overwhelming to cope with everything associated with your condition. Remember to take care of your emotional health just as you are taking care of your physical health. For some, taking a "break" from thinking and talking about your condition might prove worthwhile.

Learn from others

Learn as much as you can about the illness so that you can understand what is happening. Attend a workshop or support group for emotional support and to hear what has worked for others.

Contact your doctor

People with HES may experience a worsening of their condition. If you experience any symptoms that concern you, contact your doctor immediately.