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Nurse Taking Patient's Blood Pressure Expecting Woman, Man and Child Embracing


Debbie Thomas’ letter to the Sickle Cell Information Center at Emory Libraries & Information Technology reveals some key success factors in the lives of sickle cell disease (SCD) patients that are unfortunately not as common in that community as they should be.

At time of writing the Letter, Debbie was a 37-year-old woman with SCD. She had had encounters with other people living self-restricted, rather than disease-restricted lives because they had SCD. When she tried to educate parents using her own experience with SCD, they often looked at her as if she did not know what she was talking about. When living with an illness, the patient and their family members’ mindsets are critical to not only managing (and perhaps curing) the disease but also to how they live out their lives. Unfortunately, and far too often, a person’s beliefs become their reality, a self-fulfilled prophecy.  If you believe that SCD will or must severely limit your life, then it will! This happens not as a necessary result of the disease, but because you allowed it to do so.

Debbie’s parents set the tone for her life, determined not to let SCD rule her experiences. Parents are a child’s first and most important teacher.  They help shape a child’s outlook, philosophy, dreams, goals and ambitions at an early stage. Her parents would not allow her to fail school.  If she was sick, she either had to make up the missed work or her parents got a tutor for her. As a teacher, Debbie has witnessed SCD students missing a lot of school. These students end up falling behind and failing, largely because their parents use the disease as an excuse rather than seeing it as a hurdle to overcome.  Debbie’s experience as an SCD student and the support of her parents uniquely positions her to know what is possible in spite of the disease.  This has, in turn, developed her expectations of SCD students.

We are intrigued to read that Debbie surpassed her classmates by six months of lessons after she was hospitalized for an extended period. Her parents arranged with the school that if she could pass the year-end test with the help of a tutor obtained by her parents, she would not be held back.  How interesting it would be to  know the reaction of the school after she performed so well!  Did her performance change the school’s perspective, assumptions and prejudices about what is possible in the midst of a student’s severe illness? Are other students automatically being held back because of their illnesses? Is the school suggesting to parents of ill students that obtaining a tutor may keep their child’s scholastic schedule on track and perhaps even bolster it?

Debbie also learned a lesson from her mother’s “over protection”.  She learned to hide her illness knowing her mother would not let her out for “important teenage social events”, in order for her to take liquids and medication at home. Thankfully, she was able to have a social life while growing up rather than being isolated, which so often happens to youths who spend days and months in the hospital.

This taught her that there is little benefit to using her sickness as an excuse to get out of things she did not want to do; she had to prove that she was well enough to do the things she did want to do. She, therefore, developed a mindset for overcoming obstacles towards leading a normal life.

The same lesson was re-enforced to enable her to participate on her high school pom-pom squad: she either drank a lot of water before, during and after practice to ward off more pain crises OR she could not participate.

Clearly, Debbie was a very ambitious youth who would do anything to lead a fulfilled life. This courageous attitude was founded on first believing that she could do it. The “it’s possible” seeds were planted by her parents at a young age. Her parents taught her that each individual challenge which flowed from Debbie’s SCD should be analyzed like any other problem in life. The problem was assessed, options and alternatives for resolution were quickly analyzed and a decision was made: When she missed an extended amount of school, her parents got her a tutor and she tested six months above her classmates. If Debbie wanted to go to a social event, she learned to overcome any pain she may be experiencing; using her SCD as a crutch for sympathy or to get out of things would eventually cause her to miss out on the fun.  When she wanted to be on the pom-pom squad, she determined to drink a lot of water to minimize or eliminate pain crises…

It is this constant problem-analysis-solution process throughout her life that allowed Debbie to push past the life expectancy that the doctors had originally given to her parents. First, they said she wasn’t going to live past age 18, then it became 30. We are glad to read that when she turned 30, she realized that maybe God had another plan for her. It is absolutely critical to set one’s mind to believe and understand that doctors do not set life expectancy—God does! For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end (Jeremiah 29:11).

Debbie has wisely been self-observant, so as to learn what factors trigger pain crises in her body.  Through that experience she noticed that those with SCD who are constantly sick seem to be missing not only good medical care, but also family support.  When she told a mother that her SCD child should be drinking water more often and be on daily doses of penicillin, that mother basically told Debbie she didn’t know what she was talking about. In light of Debbie`s experience as an SCD patient herself, the mother’s mindset is notable. Her mind was set in such a way that she could not entertain giving more weight to Debbie’s recommendations, which is unfortunate, particularly for her child.

Debbie is now married to a very supportive and understanding husband with one daughter who is adopted. The fact that she married a man with such characteristics is not surprising.  This is what she grew up with, as well as the foundation of critical success factors that her family laid and upon which her victory over SCD was built.

Debbie had a childhood family doctor familiar with SCD who could predict her pain crises. She has also dealt with medical personnel who did not believe she was in extreme pain and that she was just a pain medicine “junkie”. It is hard for her to explain just how bad the pain is and how sad and frustrating to be accused of lying about it in order to get drugs. Her experience again underscores the fact that good, knowledgeable medical care makes a world of difference in the life of an SCD patient.

For all of the reasons above, we give substantial weight to Debbie’s viewpoint. She knows what is possible because she has lived with SCD and in certain respects has overcome its challenges. Nevertheless, we do want to acknowledge that the disease manifests in widely different ways and severities among patients. From Debbie’s observations and those of so many others touched by this disease, education and strong support from family and medical caregivers are the factors that level the playing field.

If we can agree that these are critical success factors in the life of an SCD patient, can we fix these inequalities and injustices amongst this community? We are confident that through education and patient advocacy the disparity can be significantly improved. The benefits of patient advocacy (by family, friends and professionals), professionals who you can hire as your patient advocate and much more are outlined in our Free publication “Achieve Health Victory Through Patient Advocacy!”


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