Living With Sickle Cell Disease

One of the sweetest things about the summer is the sound of laughter. The sound of people enjoying each other and life — especially children. It has the ability to put a smile on the grumpiest faces. Ah, to be that young and carefree again … playing with dolls … romping in the park … discovering seashells on a beach … rounding the bases in Little League … swimming … fishing … waiting for the ice cream truck … running through the cool water of a sprinkler … catching fireflies … creating chalk art … the possibilities of a lazy, summer day are almost endless. Unfortunately, for some children, not everything in life is easy. These children live with a form of Chronic illness. And one of those illnesses is Sickle Cell Disease. The average age of onset is 2 months – 14 years. It’s sometimes even diagnosed at birth (with routine newborn screening tests).

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Sickle Cell Disease, or SCD, has been called “a neglected Chronic disease”, by some in the medical community. For a moment, let that sink in. But what exactly is it? SCD is a gene disorder that is inherited. The red blood cells of the patient are not shaped, normally. Instead of the round, disc shape, patients with SCD have red blood cells that are shaped like a sickle. Hence, the name. The disease is characterized by chronic anemia, acute pain, swelling of the hands and feet, bone and joint damage, chronic organ damage, ulcers and sometimes a reduced life expectancy. Many patients experience mild symptoms. Others have severe ones. No two patients are alike. But all must learn to live with the illness.

People have often misconstrued SCD as a “Black” disease. But, in reality, it is found in many races, i.e. Hispanics (from Central and South America), Middle-Eastern, Asian, Indian, and Caucasians of Mediterranean descent. Between 75,000 – 100,000 Americans have been diagnosed with Sickle Cell Disease. Globally, it affects about 30M people. And many who live in poor nations, with limited healthcare, are never diagnosed.         

Approximately 8% of African-Americans carry the Sickle Cell Trait. This varies from SCD, because there is only one sickle cell gene present. Those with SCD have two. Individuals with Sickle Cell Trait rarely show any symptoms and lead very normal lives.

If your child has been diagnosed with Sickle Cell Disease, it is important that you keep regular appointments with your doctor. If a specialist is needed, it is important to follow-up. Manage all of your child’s medications, carefully. You can help your child, by teaching him/her to avoid pain triggers, i.e. extreme temperature, stress, etc. Be sure to teach them not to smoke, use drugs, or drink alcohol. These things can cause pain and lead to additional problems. Encourage them to drink fluids for hydration and to rest. It’s also important to meet with their teacher/s. A child with SCD, or any Chronic illness, has special needs. Absences can add up in any school year, but health must come first. Discover how your child’s school can help, before a crisis occurs. It will make the difficult times less stressful. Your child may not always feel like taking part in some activities. Still, it is important they he/she feels included.

As your child gets older, they will be able to better communicate their concerns, feelings, pain, etc. As a parent, our first instinct is to protect our children. Some parents can become over-protective. Try to avoid that temptation. Give your child chores to do. It teaches responsibility. And that helps a child to live with any Chronic illness. Look for activities that he/she can excel in. Encourage exercise, because it will strengthen their body. Scouting. Band. Art. Dance. Various extra-curricular clubs. All will offer the chance for your child to discover what they can do, their hidden talents, build self-confidence and offer peer interaction.

Chronic illness isn’t a handicap. So, please, don’t turn it into one. Every child should be encouraged to live life, to the fullest. Like most kids, you child has dreams, i.e. college, careers, families. Dream with him/her. Help your child to set goals and attain them. The best way to accomplish this is by teaching him/her how to live with their disease. Teach your child the importance of monitoring their symptoms, taking their meds, talking to their doctor and understanding their limitations. Be open and honest with them. The more that they respect their disease, the easier it becomes to live with it. And heaven knows, it isn’t going anywhere. Love them, but try not to smother them. They need to be kids … teens … young adults. They need to live. Best of all, they can!

 

Reference Links:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4285890/

https://kidshealth.org/en/parents/sickle-cell-anemia.html

https://www.mayoclinic.org/diseases-conditions/sickle-cell-anemia/symptoms-causes/syc-20355876

https://ghr.nlm.nih.gov/condition/sickle-cell-disease#inheritance

http://www.hematology.org/Patients/Anemia/Sickle-Cell.aspx

https://www.cdc.gov/ncbddd/sicklecell/documents/tipsheet_supporting_students_with_scd.pdf

https://kidshealth.org/en/parents/sickle-cell-anemia.html

https://www.ncbi.nlm.nih.gov/pubmed/19337181

https://www.ncbi.nlm.ni

* Photo by Frank McKenna on Unsplash

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