Living with sickle cell disease is challenging

Call the NAMI Helpline at 800-950-6264 or text “NAMI” to 62640

Sickle cell disease changes how you feel and function in many ways

Also called sickle cell “anemia”, sickle cell disease affects hemoglobin that carries oxygen in red blood cells. Red blood cells are usually disc-shaped and flexible so they can move easily through blood vessels. When a person has sickle cell disease, these red blood cells are crescent or “sickle”-shaped and do not bend or move easily through small blood vessels. Because the crescent shape of sickle cells makes them stiff and sticky, they can stick together and block blood flow. People with sickle cell disease experience tissue injury, impaired oxygen supply and inflammation throughout their body. This leads to pain, fatigue and other difficulties, including in the brain and central nervous system.

Serious symptoms of sickle cell disease include:

Severe pain

A serious pain event also called a “pain crisis”, “sickle crisis” or “vaso-occlusive crisis” is common among people with SCD and may occur in children as young as 1 year of age.

Chest pain, coughing, fever, shortness of breath

These may be symptoms of acute chest syndrome which requires treatment in the hospital.

Fatigue, shortness of breath, dizziness, irregular heartbeat

These could be symptoms of severe anemia, slenic sequestration or aplastic crisis.

Sudden weakness, numbness on one side of the body, confusion, trouble seeing or walking

These symptoms could be signs of a stroke.

Fever

See a healthcare provider for a fever over 101.3ºF or 38.5ºC.

Priapism

Having an erection that lasts 4 hours or more is an emergency and needs to be treated in the hospital.

Other serious complications may include chronic pain, stroke, kidney disease, infections, and lung or eye problems.

The brain is impacted by sickle cell disease and because of this, your mental health is affected

You may experience symptoms of brain fog, anxiety, depression, as well as troubling feelings resulting from trauma faced during a vaso-occlusive crisis. The uncertainty of symptom flare-ups and the daily strain of managing this condition can affect your mood.

Sickle cell disease impacts your emotional wellbeing

Depression is common in sickle cell disease, and while there are many physical reasons for symptoms, research consistently shows a clear relationship between chronic pain, stress, and depression. It can become a cycle of symptoms that are difficult to cope with, making sickle cell physically and mentally impactful on a daily basis.

There are resources that can help and a community available to support you.

Visit OurIronWill.com to find downloadable tools, watch videos, and meet other people living with sickle cell disease.