Kim’s lung biopsy procedure went very well. Now it’s simply waiting for the results to come back. We should have them soon.
Since her biopsy was done at the hospital where she works — in the same department where she is a nurse — she knew all the doctors, nurses, and technicians. One of the doctors she works with came to see Kim before the biopsy and said, “I am learning so much from Kim’s disease. I had no idea rheumatoid arthritis affected anything other than the joints!” We told her we didn’t either prior to Kim being diagnosed.
May is Arthritis Awareness Month (It’s also Lupus Awareness Month! Follow our good friend Liz and her fight with Lupus at More Than Optimism) and I thought this would be a good time to help explain some of the facts we have learned about rheumatoid arthritis, or as we prefer to call it rheumatoid autoimmune disease (RAD). The reason for this post is to help educate and raise awareness about this disease.
- RAD is an autoimmune disease in which the patient’s own immune system attacks itself. There is no cure.
- RAD affects approximately 1.3 million adults in the United States. That accounts for 1% of the nation’s population.
- Women are three times more likely to be diagnosed with RAD than men.
- Those who suffer with RAD are normally diagnosed with the disease between the ages of 30 to 60, but RAD can strike at any age even in teenagers. Some patients are even younger than that when they are diagnosed. Their RAD has a special name, Juvenile Rheumatoid Arthritis (JRA) and they can be diagnosed when they are just toddlers.
- Around 300,000 children are currently living with JRA. Here is a blog about a family who battles RAD and JRA — Life Autoimmune. Stacey, the mom, has RAD and other autoimmune diseases and her daughter, Jordan, was diagnosed with JRA when she was two. Please like Jordan’s support page on Facebook called, Jordan’s Pink Angels and help bring a smile to her face.
- RAD manifests itself in different ways in different patients. Some have mild RAD while others struggle with a severe disease. Some have symptoms that slowly worsen over many years while others go from no symptoms to full onset of joint pain, swelling, and even joint deformity within a few short weeks.
- Some common symptoms of RAD are joint pain, joint, deformity, swelling, low-grade fevers, morning stiffness, extreme fatigue, anemia, and muscle pain.
- Other symptoms can include RAD “fog”, a periodic inability to concentrate or remember things; bumps or lumps of tissue known as rheumatoid nodules — they can grow on the fingers, toes, elbows, and inside the lungs; hoarseness or complete loss of the voice — this may be temporary, but it is often permanent.
- Dental research has shown that flossing your teeth may help to prevent heart disease. This is good to know since at the moment someone is diagnosed with RAD their risk of suffering a heart attack doubles. Doctors don’t know why or how, but they believe that RAD and rheumatoid heart disease may have a common origin.
- Researchers believe that RAD lies “dormant” in individuals until something “triggers” the disease into activity.
- Many people with RAD have at least one other disease, often another autoimmune disease. These include, but are not limited to; Sjogren’s Syndrome, Crohn’s Disease, Raynauds, sarcoidosis, lupus, anemia, psoriasis, colitis, and others. Many others with RAD also suffer like Kim does with fibromyalgia syndrome which causes full body pain in the muscles, tendons, and other soft tissues.
- Some patients find relief from their symptoms and enter into short periods of remission. The majority of patients never get remission from their pain and other symptoms.
- RAD research is grossly underfunded. A report from 2007 included this information: “RA is the most common form of inflammatory arthritis and costs society more than $80 billion each year. The disease affects more than one in every 200 Americans. However, research funding for RA averages as little as $25.90 per patient and remains significantly low compared to other chronic diseases that affect far fewer people like lupus, diabetes and multiple sclerosis, which average $330.00 per patient.”
- RAD is a systemic disease which means that it can attack the whole body. As our doctor friend is learning, it isn’t just a “joint disease”. RAD can also attack the heart, lungs, and the eyes as well as other parts of the body.
- Up to 50% of RAD patients will have the disease affect their lungs. There is significant research that needs to be done in this area and some studies show that the percentage of affected patients could be much higher. Recent studies have also shown that RAD may actually begin in the lungs.
- While longevity of life has increased over the last 50 years in the general public, there has been no improvement made for those with RAD. This has created a remarkable mortality gap between those in the general population and those diagnosed with RAD. A woman diagnosed with RAD has more than a 50% increased risk of death when compared to women who do not have RAD.
- The most common causes of morbidity in RAD are heart disease, lung disease, and infection.
- Recent drugs have helped some patients significantly with some of their symptoms. However, there is no proof they help improve longevity of life.
- While drugs like Enbrel, Humira, and Remicade have done wonders to help many RAD patients get some relief from their symptoms, there are many others who find no relief from those drugs. You want to know an “insiders” secret? The RAD community is not especially fond of the commercials put out by the drug companies showing people riding horseback, dancing, and with perfect joints because none of that is an RAD reality. We feel they actually reduce the awareness of the disease.
This reason for this post is to inform, instruct, and make others aware that this is not simply a “joint disease”. Shortly after Kim was diagnosed, another doctor she works with learned that she had been diagnosed with RAD. He said to her, “Well it could be worse, at least it isn’t lupus.” No, it’s not lupus — and I’m certainly not trying to lessen the seriousness of lupus — but the fact that medical professionals don’t even know how serious RAD can be shows how much work needs to be done.
Granted this post has a been more serious than what I usually post. RAD is a serious disease. We continue to hope for a cure and strive to help raise awareness for RAD, but in spite of all of this we trust in God as the ultimate Healer. We rest in His sovereign hand and the peace that even through trials He is working all things for His glory and our good. He has known since time began every detail of lives and has determined our very endings in order to honor Him. May we be faithful to that until the end.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
(Psalm 139:14-16 ESV)