To The Editor:
I was intrigued to read the cover story in the People section in last week’s paper titled “Taking Control With Exercise” especially when I noticed it was about an arthritis sufferer who “took control” and now teaches an arthritis specific exercise class. Arthritis is a disease that does not get much media attention, so the fact that a cover story had been written was pleasing to see.
The article mentioned that in order to participate in the class, the individual must be age 60 or older or on disability. I can only assume that the reason for this requirement is because classes are held at the Washington Senior Center. What I perceived from the article was that arthritis is an “elderly” person disease. This misconception continues today. Most people do not realize that children get arthritis, too. My goal with writing this letter is to educate the general public about juvenile arthritis.
We are arthritis advocates. Our son, age 14, has lived with rheumatoid arthritis, a crippling joint disease, for four years now. He has RA in all fingers, both knees and one elbow. Juvenile arthritis occurs when your immune system decides to attack healthy joints causing joint swelling, fluid build-up, chronic pain and stiffness in an individual under the age of 15. Medication is required to suppress the overactive immune system. In our situation, daily medicine, weekly injections and frequent joint drainings are needed. We visit St. Louis Children’s Hospital several times a year for followups, blood work and outpatient procedures. Juvenile arthritis is a life-changing disease.
Exercise is a great way to help gain control of your life. When a person (even a child) lives with arthritis you never know when you will be in so much pain it will keep you from getting out of bed or you will have to modify your daily activities because of fluid in the joints. Rheumatologists tell us it is so important to keep moving the joints, this helps prevent them from “locking up.” What was disheartening to read in the article was that only the arthritis sufferers who were age 60 or above or the ones who are on disability were able to benefit from this class. We are not indicating our teenager would have wanted to exercise with other “older” people, but there are other adults in this community (we do not know of another local child) who have arthritis but do not meet the requirements for the class.
The class could and would offer so much more than exercise. The network of support one receives from people who are in the same situation is priceless. No one really knows how people who suffer from arthritis feel, except for the other people who have it. We, as parents, try to understand how our son feels, at his worst, but he is the one in pain, and all we can do is be there to love and support him.
Arthritis is often dubbed “an invisible disease” because people cannot see that a person has it, unless your joints have reached the deforming stage. Truth be known, arthritis is the No. 1 cause of disability in the United States. A disease that most people can’t see in another person costs our nation billions of dollars annually.
We are often told when we are out how good our son looks and that one would never know he has RA, if they hadn’t been told. This is a welcomed compliment, because it is not always the case . . . if a person does not feel good, they don’t go out. When a person is in pain, they stay home. When a person has their joints drained, they are out of commission for two days. When a person is dealing with side effects of the medicine, they stay in bed. Our son is passionate about baseball and continues to play, however, after practices or games, icing both knees is usually required to keep the swelling and fluid down. This is the side of arthritis that most people do not see.
Currently, there are 300,000 children living in the United States who suffer from juvenile arthritis . . . it is often cut from the research budgeting delaying research. The projected rise of arthritis diagnosis in the United States for 2005 through 2030 is 34 percent. This disease will continue to cost the nation billions and eventually “disable” the people who are affected until a cure is found. Arthritis cause researchers at the Center of Disease Control located in Washington, D.C., are optimistic that a cure could be found in our son’s lifetime. We are prayerful the next generation will be offered a preventative immunization.
If we have educated one person with this letter, we have succeeded with our mission as arthritis advocates. Arthritis is not a “grandparent disease.” We are happy to have read that another person was able to gain control of their life because too often it’s not the case. We just would have liked to see that all people who suffer from arthritis would have been eligible to take part in the class.