Lack of research and awareness with rheumatoid arthritis leads to patients feeling overwhelmed and lost

By Carey Wooley

Doctors use MRI scans, like the one above, to diagnose and analyze inflammation and joint damage.[Photo By Carey Wooley]

In the year 1800 a French doctor by the name of Augustin Jacob Landré-Beauvais first wrote about the condition we now know as Rheumatoid Arthritis. Rheumatoid Arthritis, or RA, occurs when the immune system attacks the lining of different joints in the body, causing inflammation and many other health issues along with it.

“RA is an immune complex autoimmune reaction,” nursing student Isabella Delnido said. “This means that immune complexes, which form in joints and cause inflammation and tissue damage. I’ve also learned that RA can cause the activation of complement and lead to flare ups.”

The word arthritis is often associated with aging or the condition known as Osteoarthritis which is the breakdown of joints over time. In children under the age of 16 RA is known as Juvenile Idiopathic Arthritis or JIA. 

“People often confuse RA with other types of arthritis,” RA patient Brooke Garner said. “The easiest way to explain it is that osteoarthritis is just the wear and tear of your joints over time and a normal thing compared to rheumatoid arthritis which is literally your body attacking itself.”

Garner was first diagnosed with JIA when she was 14. She went to the hospital after experiencing excruciating pain in her jaw and a surgeon performed an arthroscopy. This is a procedure where a surgeon makes an incision in the jaw and looks for fluid and swelling in the joint. After the procedure it looked like she had RA and she was sent to a rheumatologist. 

“It was very difficult getting diagnosed so young because it’s harder to treat pediatric rheumatology rather than regular rheumatology,” Garner said. “Also dealing with it while in high school and going through surgeries was really hard.”

There are a lot of issues regarding access to pediatric rheumatology and the research regarding how RA and other chronic diseases affect children. According to the Arthritis Foundation there are eight states with no rheumatologists and six with only one. 

There is a fundamental lack of understanding regarding how JIA affects kids by doctors and others. There is also a gap in research on how RA and JIA affects kids’ physical and social development. 

“I’ve had a lot of push back from doctors who did not believe my condition or didn’t understand,” Garner said. “The first children’s rheumatologist I went to told my mom that at 14 years old I was seeking attention and wanting opioids.”

Even in states where there are multiple pediatric Rheumatologists, they are often stretched thin. Garner is from Austin, Texas, which has only three pediatric rheumatologists across the city. Most Rheumatologists in bigger cities take patients from surrounding areas and according to the Arthritis Foundation families travel an average of 57 miles to find pediatric care. 

“I think in general that pediatric doctors tend to be a lot more empathetic and warm and that’s a good thing when you’re a kid hearing all of this overwhelming information,” Mother of RA patient Ianthe Brock said. “Although it can be really hard to get an appointment with them, I remember we waited four or so months for my daughter’s first initial appointment.”

According to the National Library of Medicine there is a lack of research and understanding how chronic pain affects children. RA causes intense chronic pain that in some cases develops into conditions like Fibromyalgia. 

“Although many doctors are empathetic to those with chronic illnesses, they are unable to physically step into our shoes,” Emma Kuhn, a patient that experiences arthritic pain due to a rare blood condition, said. “Many of us are in so much pain on a day-to-day basis that it becomes dulled and numbed over time. As a result, the pain scales that numerous physicians rely on are skewed. 

In 2020 the Arthritis foundation started the Kids get Arthritis too movement to bring more awareness for children with the condition and help support families struggling with the diagnosis.

“The Arthritis foundation affects my life tremendously,” Garner said. “They’ve given me resources and also let me tell my story to the community and they have given me a purpose and a way to harness my arthritis. They are a community for so many different reasons. All the money they raised for donations and all of such are going to cure arthritis and that’s for all types of arthritis.”

There is no cure for RA but there are several different treatment options after a patient gets diagnosed. The most common medication prescribed is Methotrexate. This medicine most commonly comes in a weekly injection but also has liquid and pill forms. This medication can be effective but has many side effects and doesn’t work for all RA patients. 

The other common option is a class of expensive drugs called Biologics. Some common biologics are Humira, Orencia, and Actemera. These drugs target specific proteins in the immune system and suppress them to try and stop the immune system from attacking the body. 

While these drugs can be very effective, they also have severe side effects and there’s no way of knowing which one will be the most effective. Each biologic focuses on a different protein and there’s no one way to know which one to choose so it can be a lengthy process to find a drug that works.

“Biologics are a guessing game by the doctors so it’s a very frustrating and a very, very long process,” Garner said. “I’m still not in remission because there’s so many different possible options for medication. Biologics lower the immune system so the symptoms range drastically from nausea to headaches to severe symptoms like liver damage and aseptic meningitis, which I got from one of my treatments.”

If the joint damage is extreme enough a surgeon may decide to do a full joint replacement. Garner’s jaw joints had deteriorated and she was in constant pain so her surgeon decided to go through with a full replacement of both joints.

“The replacement was a great process,” Garner said. “It took a while to get it and it was a difficult process to get to the replacement but after it was amazing. I woke up for the first time in two and a half years migraine free.”