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article imageNew hope for sufferers of Relapsing Polychondritis Special

By Kevin Jess     Mar 26, 2010 in Health
Centreville - March is National Autoimmune Diseases Awareness Month in the U.S. The designation was given to bring about awareness of autoimmune diseases. One of those diseases is a rare form of arthritis called Relapsing Polychondritis.
Relapsing Polychondritis (RP) is a rare, chronic disorder of the cartilage that is characterized by recurrent episodes of inflammation of the cartilage of various tissues of the body. It can affect the ears, nose, joints, spine, and windpipe. Anything that contains cartilage. It can even affect the eyes, heart, and blood vessels as they have a similar biochemical makeup to that of cartilage, says
RP is one of over 100 autoimmune diseases, all chronic, and many are life threatening, including RP. Grouped together they represent one of the top 10 killers of women under the age of 65, reports NewWise.
Autoimmune diseases tend to target women. Around three-quarters of all patients with an autoimmune disease are female and the diseases are on the rise in the U.S. and around the world. For instance, celiac disease, another autoimmune disease, tripled in the past 10 years in Minnesota alone.
A diagnosis for RP is not easily found. RP is rare, affecting only 3 to 5 people per million.
For Carol Giordano of Cincinnati, Ohio, it took almost 10 years before she finally had a diagnosis. She recalls, "I saw well over a dozen doctors over the course of four-and-a-half years, had every test imaginable and then some, and was suspected for everything from Lymphoma, to Lyme disease to Lupus. None of my symptoms fit the 'text book' description during that time. By 2002 I had a 'tentative' diagnosis, then traveling to the Cleveland Clinic, the Mayo Clinic and to a Relapsing Polychondritis specialist in Seattle to get expert opinions and recommendations. It then took another 4 years for it to become definitive because of the evolution of my symptoms and my attempts to control it."
RP presents itself in different ways for different people, so for Ellie Kennard of Canning, Nova Scotia diagnosis was a little quicker. She says, "I self-diagnosed as I had a condition which is not infrequently associated with Polychondritis and knew that the symptoms I was experiencing might be due to RP. I went to my family doctor with my suspicions and he enabled my denial by saying that it was unlikely as it was such a rare disease. After another year of symptoms and really feeling quite ill for much of the time, I asked to be referred to a specialist (Ear Nose and Throat surgeon) who diagnosed Relapsing Polychondritis. It is possible that this condition was the actual one I had when I had been diagnosed originally with the associated condition."
Relapsing Polychondritis affects people's lives differently, not only in the way it presents itself but the way it takes a toll on person's physical and emotional state. The disease interferes with the daily routine of the individual so it becomes necessary to be inventive and change how daily chores are done. If there is pain you "might have to hold things differently", says Ms. Kennard. She added, "the main burden of heavy household tasks has shifted to my husband."
She worries that she may not be able to afford treatments in the future as she travels to Germany from Canada twice a year to visit a practitioner who prescribes an intensive treatment comprising weekly injections of German biological medications.
Ms. Kennard has not been able to use a conventional phone for some time, so relies on the Internet and can talk better by using Skype as putting a receiver to her ear can cause inflammation.
Sonia Gore-Snedecor s ear when inflamed. It scares her that this also happens to her windpipe and ma...
Sonia Gore-Snedecor's ear when inflamed. It scares her that this also happens to her windpipe and makes it difficult to breathe.
Sonia Gore-Snedecor
When I asked Ms. Giordano if RP had changed her daily routine and her plans for the future it was somewhat difficult for her to answer as the disease has affected so many areas of her life. She told me, "The short answer is a profound YES. I started with a full-time job and two part-time jobs. I’ve had to give up one part-time job which I dearly loved (a head coaching position for division I high school girls track and field), and drastically modified the other two jobs. I have always been a doer, a multi-tasker. Now, I know I can’t be out for more than three hours a day, or I’ll suffer dearly for it. And, that is just out, not necessarily moving around or doing a task. I have to be vigilant to conserve my energy and not provoke or prolong a flare. My main focus is my family. I have 7 grandchildren whose lives I want to share as much as possible. It is hard to make choices and impose restrictions. But that is the only control I have over this, to help myself."
Ms. Giordano says RP hurts her in other ways. RP is one of those diseases where you are sick but you don't look sick, most of the time. Unless she has an inflammation or is coughing out of control she looks fine which means family members don't always ask how she's feeling. She says, "That stings sometimes, but I think I'd rather have that than the inevitable 'How aaarrrre you'? from people (good-natured, but sometimes curious, gossip-seekers) I haven't seen in awhile and know I have some rare disease."
Giordano is the administrator of a FaceBook group that keeps its members informed about current research but mostly lets people share their stories. After reading the postings I was shocked at the number of children being diagnosed with the condition and how worried the parents were. There were many heart-wrenching stories but there was also hope. Some were happy as they seemed to be in remission while others posted items of interest concerning research that may someday help them to live normal lives.
So what gets these women through the painful and debilitating episodes?
For Carol it is a constant struggle as it is for most. She says, "I get through these episodes with constant self-talk. I have to continuously tell and remind myself not to push it. I do not use pain medicines unless it is unbearable. I do not like the possibility of addiction, as nothing below a narcotic level has any effect on my pain. Rest is paramount, along with controlling the inflammation, of course. When it gets really bad, for me (and most others) the only way to curb it is with predniisone, which I really detest taking for many reasons. The only other ways are ice or heat, and as much relaxation of mind and body as possible."
Ms. Giordano also supports ongoing research and calls herself a "pray-er". She has been to see Dr. Jane Buckner at the Virginia Mason Medical Center in Seattle, WA. "Dr. Buckner is a leading research Rheumatologist at the Benaroya Research Institute, which is affiliated with the Medical Center. She uses the RP Registry and Repository, to which I belong, and she is working hard to unlock the mysteries of this disease through her RP study."
For Ellie the knowledge that a flare up will pass helps, but it is her faith that stands out as what gives her hope and strength. She quotes Isaiah 33:24 from the Bible where it says, " And no resident will say: 'I am sick'."
More about Relapsing polychondritis, Research, Disease, Auto immune, Cartilage
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