One responsibility of people living with a chronic disease is to understand the disease. This means more than learning about what caused the disease and what you can do. It also means seeing how the disease and its treatments affect you. You are the person who lives with sickle cell disease (SCD) every day.

Having a chronic illness does not mean that you cannot go to school, work or live your life. Having a chronic disease means  you need to take ownership for learning skills that will help you maintain and promote your health. 

Tips to Being Healthy

Staying healthy can help prevent having a pain crisis. It is best to limit the time spent in the emergency room to times when the clinic is not open, and you are having a change in your health that you are not able to manage on your own. Having fewer hospital stays will reduce your risk for blood clots and infections. 

How you cope with your disease and manage stress can impact your health. The goals of SCD management are to prevent complications, control symptoms and limit the impact the disease has on your life.

Learning healthy habits can help you feel your best. You should drink 8-10 glasses of water per day, eat a healthy diet and always dress appropriately for the weather. Regular check-ups are important and are a good time to talk to your provider about the best way to manage your disease, how to prevent infections and topics like safe sex and mental health. It is also good to have a strong support system, and we encourage you to attend the sickle cell support group

Sickle Cell Disease Action Plan

Use the chart below to help you recognize warning symptoms and the actions to take to help maintain control of your disease.

Green Zone

Great Control

  • Keep appointments in clinic
  • Receive regular eye checks
  • Receive a dental check every six months
  • Keep vaccinations up to date
  • Take your medication
  • Eat healthy and drink 8-10 glasses of fluids each day
  • Avoid alcohol, smoking and street drugs
  • Avoid too much exercise or stress
  • Dress for the weather

Action

Keep up the good work and continue your actions to maintain control of your disease

Yellow Zone

Worsening Symptoms

  • More yellow eyes
  • More pain
  • Less energy
  • Cough
  • Vomiting or diarrhea
  • Swollen joints
  • Pale lips or palms

Action

  • Rest and drink more fluids
  • Try a warm bath or shower, warm packs, heating pad or massage
  • Relax more. Try listening to music, watching movies or TV or playing video games
Red Zone

Danger Signs

  • Fever greater than 101.5
  • Trouble breathing
  • Bad headache
  • Cannot use hands or legs
  • Weakness or numbness in an arm or leg
  • Trouble walking
  • Slurred speech
  • Blurry vision
  • Pain not controlled by home medications
  • Men: prolonged erection of the penis ( more than 4 hours)

Action

  • You need to be seen by a provider right away
    • Dr. Joshua Field
    • Kathryn Koch, APNP
    • Amy Mager, PA-C
    • Cynthia Leonard, MSN, RN
  • Call the Sickle Cell Clinic at 414-805-2220
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