Sickle cell disease (SCD), an inherited blood disorder that affects red blood cells and the delivery of oxygen to the body, is typically diagnosed in infancy through blood tests and represents a subpopulation of people living with chronic illness.

Normal red blood cells are round and flexible, making it easy for them to pass through both large and small blood vessels. Healthy cells will live for roughly 120 days, giving the body adequate time to create new replacements. Sickle cells, on the other hand, are hard and pointed, creating a crescent or sickle shape. These cells have difficulty passing through small blood vessels. At times, sickle cells may stick together, which prevents blood flow from reaching parts of the body. As a result, tissue that does not receive normal blood flow will eventually become damaged. A sickled red blood cell will live less than 20 days on average. As a result, an individual may become anemic as the body struggles to replace the high loss of red blood cells.

Tosin Ola, BSN, RN, a nurse in Carlsbad, California, is a mentor, friend, and advocate for those living with Sickle Cell Disease. She understands the unique challenges these individuals face on a daily basis as she, too, is living with sickle cell disease. Because September is Sickle Cell Awareness Month and many are unfamiliar with the disease, we asked her to share the top five things she wanted people to know about living with sickle cell.

1. Anyone can have sickle cell disease.

While sickle cell disease is most commonly found in people of African descent, it has been discovered in people of Hispanic, Mediterranean and Middle Eastern descent. It affects nearly 100,000 Americans.

“Everyone should be tested to see if they have sickle cell trait,” said Ola. “It’s a simple blood test which can be completed with your annual blood work. Encourage your partner to be tested, too.”

2. Episodes strike without warning.

When sickle cells stick together and block blood flow, this is known as a crisis or pain episode. Pain occurs without warning, may be mild to severe, and last any length of time.

“Sickle cell episodes often leave us dealing with massive amounts of pain for several days or weeks,” said Ola. “They can happen multiple times within a month and the severity may increase as we age.”

Due to pain episodes, Ola missed her high school graduation, numerous birthdays, and has been sick while on vacation. She almost missed her own wedding as she was experiencing a pain episode right up until she walked down the aisle.

“We have to live in a constant state of flux, making plans and knowing that we may not be able to attend,” said Ola. “We really want to be there, but our bodies are just not cooperating.”

3. A crisis can be triggered by anything, or nothing at all.

While it is not always clear what triggers a pain episode, illness, temperature changes, stress, dehydration and high altitudes have been known to be triggers for some individuals.

“Sickle cell teaches me to live a life of balance. When I’m not in balance, I am going to have pain,” said Ola. “If I don’t get enough rest, this can trigger a pain episode. Not drinking enough water or staying hydrated can cause me to have excruciating pain all over my body.”

4. Damage is happening to our tissues and organs

Imagine having an unrelenting charley-horse present in more than one part of the body at a time. This is the best comparison Ola has for explaining what it feels like when a pain crisis strikes. Pain often occurs in the lower back, legs, arms, abdomen and chest.

For severe, ongoing pain, an individual may need to be hospitalized and treated with painkillers and IV fluids.

“For hours, days, and sometimes weeks we deal with this intense pain,” she said. “We feel the painful throbbing of each heartbeat as our blood tries to push through our veins.”

Other complications of sickle cell disease include swelling in the hands and feet, jaundice, gallstones, acute chest syndrome, stroke and damage to bones and organs including the heart, lungs, spleen, kidneys and liver.

5. There is no “Universal Cure”.

Treatment varies from person to person, but often includes health promotion and symptom prevention. Medications such as anti-inflammatories, antibiotics, and Hydroxyurea, an oral medicine that has been shown to reduce or prevent several sickle cell complications, may be prescribed for daily use. Doctors may also recommend red blood cell transfusions to help raise the number of healthy red blood cells within sickle cell patients.

Research and more aggressive treatments have changed a sickle cell diagnosis from a condition that commonly shortened a child’s life, to a disease that can be managed with less pain and better life expectancy. Today, people with sickle cell disease can survive beyond their 50s and have the ability to live full, active and independent lives by continuously making good health and wellness decisions.

“By educating ourselves, ensuring our families are tested for sickle cell trait, educating others, and continuing the discussion, hopefully we will be able to eradicate and reduce the number of affected individuals in the future,” said Ola.