The key player in any health care scenario is the patient.  Not the highly rated hospital, the internationally famous expert, the newest drug.  A passive patient is a patient at risk. This seems burdensome to someone who is gravely ill or in crisis. However, you may one day be a patient and you need to know everything about your body and any medical conditions now.

A recent case makes the point.  An 18-year-old pregnant woman presented in her physician’s office in acute pain.  She was accompanied by her mother/labor coach. While the medical office staff was preparing the woman for transfer to the hospital, her mother asked the nurse if she thought this crisis had anything to do with her daughter’s sickle cell anemia. The nurse was stunned.  No one on the medical staff knew the patient had sickle cell disease.

Yes, there are many possibilities for the medical staff to have detected the condition earlier. However, the patient had been diagnosed as a child and been told by her parents that she had sickle cell disease just as she had been told she had brown eyes, was 5’6″ tall, and had a mole on her lower back.  Because it had not been presented to the patient as being particularly serious she didn’t take it seriously.  She never mentioned it on health information forms just as she didn’t mention the mole on her back.

Sickle cell disease changes the way a pregnancy is monitored.  If left unmanaged, the patient may have a crisis of acute pain, premature birth, a low birth weight baby, and a higher than normal rate of stillbirth.  Regular monitoring and additional therapies help sickle cell women deliver healthier babies.

As a patient, when you are told you have a condition learn everything you can about it.  Do not leave the doctor’s office without literature about the disease, a referral to counseling or support group for the condition, or an internet website address for more information. Doctors are not full time patient educators and when giving information, they are more likely to focus on the mechanics of the disease rather than what the patient needs to hear. This patient needed to know that her condition had enormous consequences in every phase of her life, particularly pregnancy, and that she must include it with her medical history to every new physician and provider.  Such information was more important to her overall well-being than a clinical overview of the lifespan of a sickle cell compared to a normal red blood cell.

Although the patient in this case had sickle cell disease, there are numerous conditions that wouldn’t seem to affect general health but they do.  For example,   mitro valve prolapse (a heart condition) requires prophylactic dosages of antibiotics before dental work. As a patient, you are responsible for knowing the general effect of diagnosed conditions on your health.  No one else cares about your health as much as you do. Be proactive.  Ask questions.

For more information on sickle cell disease, please see Sickle Cell Disease Association of America.