Admittedly, I’m no expert when it comes to sickle cell disease, but after reading about an inspirational young woman who is forging on to live—and I mean LIVE—her life, I’d like to share a snapshot of sickle cell disease (SCD) that might help you better understand it, too.

I’ll give you the sizzling highlights of her uplifting story. But first, here are some sickle cell basics:

• Sickle cell is a hereditary lifelong chronic illness.
• SCD represents a host of varying genetic red blood cell disorders.
• SCD causes abnormalities in hemoglobin (red blood cells) known as hemoglobin S (sickle hemoglobin).
• Hemoglobin distributes oxygen to every cell in the body. Normal red blood cells are round in shape so they can move through small and large blood vessels to carry oxygen. Abnormal, sickle-shaped cells adhere to blood vessel walls and can block blood flow. As a result, oxygen cannot be carried to other cells and tissues.
• Since SCD is genetic, it is impossible to “catch it” from someone, like the flu or a sexually transmitted disease.
• How the disease affects people varies from person to person.
• In countries like the U.S., where healthcare is advanced, people who have SCD can now expect to live into their 40s-60s, a vast improvement over past years.
• Attacks are unpredictable and can require hospitalization.
• Symptoms, like pain, can be reduced through treatment, which can also help to extend life.
• Early diagnosis is key to living well with the disease.
• Stem-cell transplants are showing promise to cure certain forms of SCD but are very costly.

Back to the uplifting story:

This young gal and mother has come a long way in her life with SCD. AND she has healthy expectations to live a normal life, a far cry from life expectancy back in the ’70s when the average person with SCD lived to around 14 years.

Although she has the most acute form of the disease, and doctors told her parents she’d be lucky if she lived beyond her 18^th birthday, they refused to let their daughter be another statistic.

One of the things that may have been a game-changer for her is starting treatment early: hydroxyurea, which has apparently worked for her. Her brother, who also has SCD, took the treatment, but did not have the same experience. So I think it’s important to approach any treatment with caution after working closely with your healthcare team.

If you’d like to read more about her, read here.

Now, she’s a mom, a home-owner, and student in pursuit of her master’s. She credits having a positive attitude as a key to living well with SCD.

Do you think life with SCD can really be affected by maintaining a positive attitude? Please post on Patient Worthy. You are not alone.