Hypereosinophilic Syndrome Resource - Caring for Someone with HES

Defining HES: Too Many White Blood Cells

HES is a rare group of blood disorders. People with HES have an abnormally high number of white bloods cells, called eosinophils, in the blood and tissues for no apparent reason. When there is a build up of eosinophils, they can release toxins into the body that can damage organs. This buildup is most common in the heart, central nervous system, blood, lungs, skin, stomach, and intestines. Current estimates suggest that HES affects between 2,000 and 5,000 individuals in the U.S. As HES is a rare blood disorder and can be difficult to accurately diagnose, there may be many more people with HES.

Diagnosing HES: A Process of Elimination

Many of the symptoms of HES are often associated with other illnesses, such as the common cold, making it difficult to accurately diagnose HES in individuals. A doctor may need to rule out other conditions before they can accurately diagnose HES. Some of the non-specific symptoms that accompany HES may include:

Weakness
Extreme fatigue
Cough
Shortness of breath
Muscle pain
Rash
Fever
Cardiac symptoms

Despite the difficulties diagnosing the disease, early recognition and evaluation for treatment are critical, as these can help reduce complications of the disease that can be serious.

Treatment of HES

There is no cure for HES. The primary objective for treatment of HES is long-term disease control aimed at reducing eosinophil levels to prevent organ damage and life-threatening blood clots.

Treatment options:

Systemic corticosteriods are commonly prescribed therapy, but long-term use is limited by potentially serious side effects.
Tyrosine Kinase Inhibitors are a type of medication that is used primarily to treat cancers, but has also been found to be effective in some patients with HES.
Second-line options include cytotoxic and immunomodulatory agents. These agents have limitations in terms of safety and tolerability.

Helping Those Living with HES

You can help care for your family member or friend living with HES by working with them and their doctors (and specialists) to monitor the person's condition. A few simple guidelines are:

Support active management of the disease
You can help someone living with HES by finding out what you can about the disease and sharing what you learn with them. Find out if they would like you to go with them to visit their doctor. If you do attend these visits, ask the doctor about eosinophil counts and create a log or record of the eosinophil counts from each visit. Also, be observant and ask how they are responding to treatment. Any physical, mental or emotional changes should be noted.

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.

Take a break
People managing any type of chronic condition can become overwhelmed. In addition to caring for someone else, it is also important to take care of your own emotional needs. For some, taking a "break" from thinking about your family member or friend and his or her condition might provide the rest you need to recharge yourself.

Finding a Circle of Support

More than 50 million people in the United States provide care for a chronically ill, disabled or aged family member or friend during any given year. Serving as a caregiver can be rewarding, but it also comes with considerable challenges. There are a number of organizations that provide resources and support to those who perform the invaluable service of caregiving.

American Partnership for Eosinophilic Disorders at www.apfed.org
National Alliance for Caregiving at www.caregiving.org
National Organization on Rare Diseases at www.rarediseases.org