WHAT YOU SHOULD KNOW:
- Hypereosinophilic syndrome (HES) is a group of conditions where you have too many eosinophils in your blood. Eosinophils are white blood cells that help fight infection with parasites (small living creatures). They are also present with certain allergic diseases, such as asthma. With HES, the increased numbers of eosinophils stay for too long in your body and cause damage your organs. The eosinophils cause damage from swelling inside the organs, including the brain, heart, lungs, and skin. The exact cause of HES is not known. Problems in your immune system or damage to the cells that make eosinophils may cause HES. The immune system is your body's defense system against infections and diseases.
- When you have this condition, you may feel very weak, lose weight, and tire very easily. Your skin may have redness, swelling, itching, or flaking. You may have chest pain, trouble breathing, and numbness or weakness in your arms or legs. Your caregiver will ask you about your medical, travel, and drug history, and do a physical exam. You may need blood tests, bone marrow biopsy, echocardiogram, and x-rays. To treat your condition, you may be given steroids, and immune system and chemotherapy medicines. You may need a bone marrow transplant if medicines cannot decrease your symptoms. Diagnosing and treating HES as soon as possible may help relieve your symptoms and prevent further swelling and damage to your organs.
AFTER YOU LEAVE:
Take your medicine as directed.
Call your primary healthcare provider if you think your medicine is not helping or if you have side effects. Tell him if you are allergic to any medicine. Keep a list of the medicines, vitamins, and herbs you take. Include the amounts, and when and why you take them. Bring the list or the pill bottles to follow-up visits. Carry your medicine list with you in case of an emergency.
- Immune system and chemotherapy medicines: These medicines may slow the making of eosinophils to decrease the number of them in your blood.
- Steroid medicine: This medicine decreases inflammation (redness), which is redness, pain, and swelling. Inflammation may be found in organs damaged by eosinophils. Steroids may also decrease the number of eosinophils in your body and prevent further damage. This medicine can be very helpful for your condition, but it has side effects. Be sure you understand why you need steroids. Do not stop taking this medicine without your caregivers OK. Stopping on your own can cause problems.
Ask for information about where and when to go for follow-up visits:
For continuing care, treatments, or home services, ask for more information.
Where can I find support and more information?
HES may be a life-changing condition for you and your family. Accepting that you have HES may be hard. You and those close to you may feel sad, angry, or frightened. These are normal feelings. Talk to your caregivers, family, or friends about your feelings. Contact the following for more information:
- American Partnership for Eosinophilic Disorders
3419 Whispering Way Drive
Richmond , TX 77469
Phone: 1- 713 - 498-8216
Web Address: http://www.apfed.org
CONTACT A CAREGIVER IF:
- You have a fever.
- You feel like throwing up most of the time.
- You get dizzy and feel like fainting.
- You have chills, a cough, or feel weak and achy.
- You cannot make it to your next appointment.
- You have questions or concerns about your disease or medicine.
SEEK CARE IMMEDIATELY IF:
- You have a fever.
- You have very bad chest pain.
- You have trouble breathing all of a sudden.
- You have very bad pain in your abdomen (stomach).
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The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.