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Rheumatoid Arthritis: A Sufferer’s Story

Childhood arthritis is the number one cause of acquired disability in children, and the sixth most common childhood disease rheumatoid arthritisfollowing asthma, congenital heart disease, cerebral palsy, diabetes, and epilepsy. It is estimated that 300,000 children in the U.S. suffer from some form of arthritis or rheumatic disease.

Juvenile rheumatoid arthritis (JRA) is also called juvenile idiopathic arthritis (JIA) and juvenile chronic arthritis (JCA).  JRA is a form of arthritis that affects children 16 years old or younger and is the most prevalent type of arthritis affecting children today. The most common features of JRA are: joint inflammation, joint contracture (stiff, bent joint), joint damage and/or alteration or change in growth. Other symptoms include joint stiffness following rest or decreased activity level, which is also referred to as morning stiffness or gelling, and weakness in muscles and other soft tissues around the involved joints. JRA can affect internal organs as well.

One early sign of JRA may be limping in the morning. Symptoms can come and go. Some children have just one or two flare-ups. Others have symptoms that never go away. JRA causes growth problems in some children.

There are three types of JRA: pauciarticular, polyarticular, and systemic onset.

Pauciarticular JRA affects four or fewer joints and about 50% of all children with JRA have this type. Large joints such as knees, ankles or elbows are usually affected. Smaller joints such as fingers, toes, wrists, and the spine can also be affected, but  less commonly. Pauciarticular JRA will usually affect a certain joint on one side of the body instead of both sides at the same time.

By contrast, polyarticular JRA affects five or more joints. Girls are affected by polyarticular JRA more often than boys.  This form of arthritis usually affects the small joints of the fingers and hands, but it can also affect weight-bearing joints such as knees, hips, ankles, and the neck and jaw. Polyarticular JRA will often affect the same joints on both sides of the body (symmetrical arthritis). Other possible symptoms might include low grade fever, a positive blood test for rheumatoid factor, and/or nodules (bumps on an elbow or other point of the body that receives a lot of pressure from chairs, shoes or other objects). Less often, inflammation of internal organs may occur. Anemia (low red blood cell count) is a common problem for these children.

The least common form of JRA is systemic onset, which affects the entire person or all body systems. Boys and girls are equally likely to contract systemic onset JRA. Systemic JRA is associated with rashes, high fevers, arthritis, and, in some children, inflammation of internal organs. In some children the systemic symptoms of the disease and fever may dissipate completely after the first few months of the illness, but the joint-related symptoms of arthritis may remain longer.

The main processes involved in making a diagnosis of JRA usually include:

  • A complete health history to help determine the length of time symptoms have been present to rule out other possible causes such as viral infections, and to find out if other family members may have had a form of arthritis that possibly could have been inherited (family history).
  • A physical examination to look for joint inflammation, rashes, nodules, signs of internal organ inflammation and/or eye problems that may suggest the presence of juvenile arthritis.
  • Laboratory tests to help rule out other diseases. These may include erythrocyte sedimentation (sed) rate (ESR), ANA, RF, HLA-B27 typing, hemoglobin and blood count testing and urinalysis (UA).
  • X-rays, or other specialized x-ray procedures of joints, bones and organs to check for infections, tumors or fractures.
  • Tests of joint, blood and tissue fluids to check for infections or inflammation.

Early diagnosis and application of the appropriate treatment program will produce the best results.  Treatment will be based on the kind of arthritis the child has and on specific symptoms.

The primary goals of a treatment program for JRA are to control inflammation, relieve pain, prevent or control joint damage and maximize joint and body function.  Treatment programs will usually include medication, exercise, eye care, dental care, and a healthy diet.  Surgery is a possible option for certain long-term issues. It has been found that JRA pain can be lessened by combining medical treatment with progressive muscle relaxation, meditative breathing, and guided imagery.

In addition, studies have shown promise using dietary and herbal supplements to help with the symptoms associated with JRA. These include fish oil, gamma-linolenic acid, thunder god vine (Tripterygium wilfordii), turmeric, boswellia, ginger, and green tea.

Some naturopathic physicians note that corn, wheat, beef, conventional dairy products, and vegetables from the nightshade family (eggplant, peppers, potatoes, and tomatoes) aggravate RA.

No one knows exactly what causes JRA. Scientists do know it is an autoimmune disorder, which means your immune system, which normally helps your body fight infection, attacks your body’s own tissues. With JRA, the immune system makes a mistake and targets healthy cells as if they were harmful.

While researching this article I was able to interview an individual who had JRA as a child and now has adult rheumatoid arthritis.  I believe this person’s story gives tremendous insight into the disease from someone who has it and has had to deal with this devastating disease on a daily basis.  I hope you will learn from this as I did, and I’m very thankful for her sharing her story with me in order to help others.

Erika was diagnosed with pauciarticular JRA (the variant that affects four or fewer joints) when she was two years old.  She had fallen down the stairs at home and her parents took her to the hospital to make sure she had no broken bones, and also because she had swelling in her right knee.  At this time the hospital was unable to find anything wrong with her and she was sent home.  Two weeks later the swelling had not dissipated in her knee and her parents took her to a pediatrician for further examination.  This is when she was diagnosed with JRA in her right knee and both ankles.  Erika’s JRA was detected through a blood test.  Erika has no family history of JRA or RA on her mother or father’s side of the family.

After JRA was detected and diagnosed Erika was put on a regimen of 16 baby aspirins a day, and her right leg was put into a soft cast each night in an attempt to keep her leg straight as the disease had begun to limit her range of motion.  Due to the disease Erika was unable to participate in any organized sports or active physical activities during her entire childhood.  In addition, she suffered from various ailments due to her compromised immune system, such as swollen tonsils, upper respiratory infections, and strep throat.

Erika’s doctors thought there was a possibility she might outgrow the disease once she reached puberty, but this was unfortunately not the case, and in fact her disease continued to progress.  Erika’s JRA progressed to the point where she was eventually accepted into the Shriners Children Hospital’s program for continued treatment of her disease.  On average she attended treatment appointments at Shriners every 6 to 8 weeks or whenever she suffered flare-ups until she was 21 years of age the maximum age she could receive treatment through the Shriners program.  While in college Erika continued her treatment at Shriners, which usually consisted of a month of intensive therapy during the summer in order to retain function and minimize additional damage to her knee.

If you are interested in donating to the Shriners Children’s Hospital please go to the below link for additional information:

http://support.shrinershospitals.org

After college Erika was fed up with all the treatments and experimental drugs, and decided to forgo them in order to regain her “mental clarity.”  She began to use Bowen Therapy as an alternative to the Western medical treatments she had been receiving.

Below is a description of Bowen Therapy as taken from the website:

http://bowentherapy.com/

A normal Bowen Therapy treatment starts with the client lying face down on a bed or massage table. Comfortable clothing is recommended and only the shoes need to be removed. The practitioner begins with a prescribed set of moves in the lower back and hips which immediately lead the body into a relaxed state. This primary stress release, and the relaxation that follows, allows oxygen to circulate more thoroughly throughout the system while releasing toxins and eliminating dysfunctional fluids. Tom Bowen developed a method of isolating the body’s energy, which is then concentrated and directed into specific muscle groups. Short waiting periods are incorporated between the moves to allow the brain time to assimilate, correlate and send a positive response to the area being worked with. Very often, stress release is so intense the client falls asleep within the first five minutes.  Between 20 – 40 minutes, the Bowen practitioner works in precise areas following a categorical program up and down the body, instructing the client to turn face up about halfway through the treatment.

Because increased oxygen production and its circulatory movement are central to Bowen Therapy, the applications are numerous. No one is too young or old to receive the Bowen benefits and a wide range of symptoms experience positive effects within 1-3 treatments given 5-7 days apart.

Following is a list of the more common ailments, which demonstrate improvement with Bowen Therapy:

Asthma
Arthritis
Bursitis
Carpal Tunnel Syndrome
Chronic Fatigue Syndrome
Colic
Colitis
Coordination & Balance Difficulties
Digestive Ailments
Fertility Problems
Fibromyalgia
Foot, Ankle & Knee Problems
Frozen Shoulder
Headache
Heart Irregularities
Lower Back Pain
Lymphodema
Migraine
Musculoskeletal Injury
Neck Tension
Neuralgia
Neutritis & Pelvic Alignment
Rhumatisim
Sciatica
Scoliosis
Spasticity
Sports Injuries
Tennis Elbow
TMJ

Erika indicated she experienced excellent results from the Bowen Therapy for about 2 years and was as close to being pain free as she had ever been.  Eventually the results of the therapy stopped working, but she also admitted she was probably pushing herself harder than she should have been.

After the Bowen Therapy stopped working Erika went to a rheumatologist.  The rheumatologist indicated she had severe swelling and bone density problems and she was back on strong prescription drugs for her condition.  The drugs worked for about six months until her immune system reacted to the medications and she began to have allergic reactions, which eventually became so severe that she developed anaphylactic shock.

Erika then began cortisone injections every two weeks in her affected knee until she stopped and decided to deal with the pain and get off all treatments again.  She was able to decently manage her condition for the next 5 years until she had her knee arthroscoped at the urging of a doctor who believed he could clean up some of the scar tissue.  Unfortunately this made her knee very unstable and at the age of 28  she received her first knee replacement.  Since this first operation Erika has had several medical procedures performed on her right knee and is on her third knee replacement.

Now in her 30’s, Erika has recently been approved to participate in an experimental infusion treatment program by the FDA.  She is awaiting the start of the trial and I hope to update this article with some good news as the trial progresses.

About the author

Mr. Collins (MS) worked for the U.S. Department of Health and Human Services (HHS) and U.S. Food and Drug Administration (FDA) for nearly a decade. In addition, he is a specialist in fitness and nutrition, a certified fitness trainer, member of the International Sports Science Association, member of the American Society for Nutrition, member of the IDEA Health and Fitness Association, member of the Weston A. Price Foundation and member of the Price-Pottinger Nutrition Foundation. Collins completed 13 years of service in the United States Military and is a proud veteran. For full bio click here.

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