An Interview with Vikki Scarafiotti: Children with Arthritis

Jul 12, 2011 by

Michael F. Shaughnessy
Eastern New Mexico University
Portales, New Mexico

Vikki Scarafiotti is President/CEO of the Arthritis Foundation, Greater Southwest Chapter
In this interview she responds to questions about children with arthritis and the challenges teachers and students face in the schools.

1) First of all, could you tell us a little bit about yourself and what you do?

My name is Vikki Scarafiotti and I am the Chapter President/CEO for the Greater Southwest Chapter of The Arthritis Foundation. The Chapter’s geographic area is Arizona, New Mexico, and El Paso. In our Chapter, 1.7 mil people have some form of the one-hundred and twenty types and diagnosis of arthritis. As CEO I am responsible for all of the operations of the Chapter including administration, fundraising and program services. The Arthritis Foundation is known as the #1 Resource for those with arthritis and both national and local information can be accessed via our web-sites at www.arthritis.org and to get to the local web-site, simply add your zip code to the location box.

2) About how many children are impacted by juvenile arthritis or some variant thereof?

There are 300,000 children currently diagnosed with a form of juvenile arthritis or an arthritis-related condition. That is more children than those affected by Type 1 diabetes and four times more than those with sickle cell anemia or muscular dystrophy. Children as young as two can have a form of arthritis which is related to an auto-immune system over performing and harming the system. Pediatric rheumatologists are the sub-specialty physicians who treat children with arthritis. There are only two hundred and fifty of these physicians across the country. In our Chapter, 8,000 children have some form of juvenile arthritis. 1,000 of those live in New Mexico. There is only one pediatric rheumatologist in the state of New Mexico who is housed at Carrie Tingley Hospital in Albuquerque. The cause of juvenile arthritis is unknown.

Current research indicates that there may be a genetic predisposition to it. Most of the symptoms of juvenile arthritis are due to inflammation. That means warmth, swelling and redness and severe pain. Other symptoms can include inflammation of the heart, or lungs or their outer lining; chronic fever, and fatigue. Children with some form of juvenile arthritis are on a strict medication regime that can include biologic injections, methotrexate, cortiocosteriods, and hydroxychloroquine. Children with arthritis have what is known as a “flare” of multiple symptoms and they frequently must miss school for long periods during this “flare” and treatment period. Often the stiffness in their joints causes an inability to walk or move and this is accompanied with chronic fever, fatigue and nausea often replicating the “flu.” Children with juvenile arthritis need exercise as an essential part of treatment and for their mobility.

3) What are some of the typical accommodations and modifications that teachers may need to make for students with juvenile arthritis?

The modifications and accommodations recommended in the school are: encouraging parents to better educate their teachers about the disease and the impacts on school attendance. Parents are encouraged to know the Public Law 101-476 and Section 504 and Title II of the American Disabilities Act as children with arthritis are included in those provisions. Teachers should be aware that students with arthritis need movement and that prolonged sitting will cause pain and stiffness. Teachers should ask the child to be physically involved in the classroom with such tasks as “assisting in passing out or collecting papers.” Students should be allowed to stand and move every 30 minutes. Students often experience difficulty walking and should be allowed extra time between classes or arrange to have student’s classes in the same general vicinity. Students should not carry heavy books as it is too much strain on their upper joints. They should have lockers as close to the floor as possible and provision of a second set of books, one in the classroom and one at home, may prevent the extra “carrying” that can cause joint damage.

A child with arthritis is extremely sensitive to the diagnosis as it is typically thought to be “an old person’s disease.” Teachers should be sensitive to this and help to include the student in all activities. Point out the student’s strengths. Help the child find a “voice” to advocate for themselves by “telling their story” with the teacher helping to lead a class discussion about arthritis. Teachers should not treat children with arthritis differently in a classroom. They should not lower their academic expectations. Teachers should be aware of the psychological stress in the family due to having a child with a chronic disease, physical limitations, medical costs and responsibility for home care, and fear of future disability.

4) What is the most prevalent form of arthritis and what does it involve?

Osteo-arthritis is by far the largest disease type in the family of arthritis. 21 million Americans have osteo-arthritis. It is not auto-immune related however; a gradual wearing down of joints cartilage. It is seen as a person ages however; it is preventable. Risk factors include: obesity, joint injury (often from sports and weights) muscle weakness, heredity and having other forms of arthritis. The fastest rising group is young women ages 25-35 who are over-training with weights too heavy for their bones and joints. School sports teams should be aware of both risk and results as osteo-arthritis onsets more slowly but surgery is the only manageable treatment. Some additional facts about arthritis include: 5% of the total adult population in America experience work limitations and arthritis is the #1 cause for work force disability. Its cost to the economy on an annual basis is $86.2 billion.

5) How aware is the average regular or special education teacher about this problem?

I don’t think that the average classroom teacher or coach is aware of either juvenile arthritis or osteo-arthritis. It has long been “under the radar screen” and for those with juvenile arthritis, they have been slow to advocate for themselves. This is part of the cultural branding of “age” identified with arthritis and the inability for an outside observer to understand the condition, including the pain, the child must endure to continue to function “normally” in a school setting. Working with our children, they report feeling isolated and unable to “talk” about their disease because, as they say, “we look ok, we just can’t move.” There should be more education provided to classroom teachers about the disease and the complexity of both its types, symptoms and treatments.

6) How many different forms and types of arthritis are there ? How are they treated?

There are over 120 types of arthritis. Some of the most frequent types for children include: Polyarticular Onset JA (meaning many joints involved); Pauciarticular Onset JA (meaning few joints involved); Systemic Onset JA (affecting the entire body and all the organs); Juvenile Lupus, Juvenile Scleroderma, Juvenile Spondyloarthritis, Juvenile Dermatomysositis (causes muscle weakness); Juvenile Vasculitis (inflammation of the blood vessels) and Juvenile Non-Inflammatory Disorders (on-going and recurrent pain)

7) Are all of these different types covered under the law?

Yes, these conditions are covered under Section 504 of P.L. 93-112 ; P.L. 94-482, and P.L. 99-457.

8) What resources do you have for parents, teachers and coaches?

I’ve mentioned the web-site and we have a wealth of information, brochures, white papers, latest research, and books for adults, children and parents of children with arthritis. I’m sending you copies of two brochures and one book. Each can be purchased through our National web-site at www.arthritis.org or by calling our Chapter Offices, listed on our local web-site and housed in Phoenix and Tucson, Arizona and Albuquerque, New Mexico.

9) What are some other options and alternatives for children with arthritis?

I’ve met several “home schooled” children with juvenile arthritis. Parents often choose this option because of the severity of the disease symptoms and the frequency which a child misses school. We work with over 300 children and their families. Our services range from social to youth development programs, like a Resident Camp Program for children with arthritis. Of the children I know, they are exceptionally mature, resilient and bright. I think it must come from spending so much time with doctors, and other adults in the health-care industry. Children with arthritis live with incredible pain and yet, I’ve never heard one of them complain. They are a remarkable group of children. Of course, I write that because I know them personally. They are full of courage and hope for a cure. They live with a chronic diseases that may cause them to be in a wheel-chair one day and playing softball the next. We should do a better job to “help them find their voice” and better educate teachers and coaches about their “special needs” and their special attributes.

I hope you’ve found this to be informative. I’m an Eastern alumni so it was good to have this opportunity. When I’m in the area, perhaps we can meet, in person.

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