This week I have been wondering what it means for a child to have a chronic disease. So, let’s get down to basics and figure this out.
When adults receive a diagnosis of COPD, hypertension, or diabetes (the most common and preventable of all health problems) their quality of life is compromised. They are educated about what changes will have to take place and how they may be able to maintain their independence for a longer time by adhering to what they have been told by their physicians and taking control of their illness.
A chronic illness, unlike an acute illness, is one that lasts for a long time. It is not the same as an acute disease such as Flu, or Chicken Pox or even a cold that one will eventually return to ‘normal.’ When we heard that Alex had asthma, I wasn’t thinking about whether it was a chronic or an acute disease. I just knew that it was encouraging to me. I felt as if I could control that, I understood it, and I was familiar with asthma. Was that a little bit of denial, or was I just stupid? The truth is that any disease or health problem is a big deal for a toddler. Children with a chronic illness may have times of relief from the symptoms, but that is short lived. There are a multitude of these diseases, of which the number one in children is asthma. Here is a short list of some of the more common illnesses that our little ones suffer from: Chron’s disease, diabetes mellitus, epilepsy, genetic disease, hemophilia, sickle cell anemia, sleep disorders, ADHD, and cancer. Some of these are present at birth and other’s develop later in life. A disease may be inherited or develop because a child has certain genes such as sickle cill anemia. Others are caused by environmental factors, like asthma. Cystic fibrosis and muscular dystrophy are examples of progressive diseases.
My son Alex would eventually be diagnosed with three of the above illnesses: Asthma as an infant, narcolepsy as a teenager, and esophageal disease as an adolescent. There were many misdiagnoses and mistreatments leading up to the diagnoses, and I will speak to that at a later time in my writings. I also have a beautiful niece who was born with a genetic disease named Ehler’s Danlos Syndrome. She has deformed hands and feet, kyphoscoliosis, and she lived the first six months of her life in a full body cast. Her mother went through the same devastation and frustrations as I did with Alex. These two cousins became each other’s counselor, advisor, and amazing friends over the years. They compared scars, compared surgeries and compared their equally frustrating lives, all while trying to be normal to the world!
A chronic disease is everyday, every week, every month, every year for life.