It can be one of your most frustrating experiences. For years your family and friends have patiently and caringly comforted you as you have experienced "phantom" pains, unexplained illnesses, and the overall disgust that comes with not being able to do what you used to do. And finally, after months and years of searching for an answer, trying to prove to yourself and to others that this isn't in your head, that you don't want to feel this way, you have a DIAGNOSIS! Finally, you can put a name to what ails you, an identifier, something to say to "what's wrong with you?", you can say
I HAVE RELAPSING POLYCHONDRITIS.
And then the inevitable question comes. "What is Relapsing Polychondritis?"
The More We Know...
Can Help Me Stay Healthy
If you are like most people, your first response will be something like "It's what I have, it's what has been causing me pain all this time".
For casual acquaintances this might even be enough of an answer, but for those close to you they will want to understand more, and that is when reality can set in, "I don't know how to explain it" is a normal reaction experienced by many.
Relapsing Polychondritis (RPC) is a rare connective tissue disorder of unknown etiology. It is believed to affect only 1 in 250,000 people. A member of the arthritis family, the disease affects various areas of cartilage throughout the body in episodes of inflammation that may or may not cause permanent damage to the nasal structure, outer ear, trachea and/or other cartilaginous body structures. Unfortunately, RPC is often both painful and debilitating. Currently there is no cure and research has not yet uncovered the exact cause. Various treatments to delay destructive inflammation episodes, known as "flares", are in use including steroids, DMARDs (disease-modifying antirheumatic drugs), antibiotics and more.
The long term affect of RPC is a reduced quality of life through possible hearing loss, difficulty breathing, pain, drug side effects and lethargy. In advanced cases loss of life can result from failure of a basic body function. Regular and consistent intervention by qualified medical professionals is the key to living with RPC. Proactive inflammation control can make a world of difference and can help you maintain an active life.
What I need is....
Your Love and Understanding
The best support friends and family can offer is emotional. To continue to recognize you as a meaningful person with a lot to offer is perhaps the best encouragement. At times this may take patience for all. Painful episodes can cause travel plan delays, special family events to be missed, and a loved ones reaction to these occurrences can make the reality easier to deal with or cause painful remorse. Family and friends loving understanding can make life tolerable. Mood swings caused by pain or chemical imbalance can challenge this relationship, no matter how strong it is. It is important for everyone to be aware of potential mood swings and to be ready to absorb them. Coping counseling may be called for.
It's not easy...
Remember You Are Not Alone
There is nothing easy about RPC. Nevertheless, a successful, useful, and rewarding life can be accomplished. To help you understand the disease at various stages and in various people, several support groups are available. One of the most important functions of a support group in RPC is to be able to talk with others who have this disease. As rare as this disease is, it is not uncommon to find that no one you know has ever heard of it.
The support groups through the Internet, telephone calls, correspondence, and occasional opportunities to meet in person offer something invaluable: someone to talk to that can empathize. It is a rare gift to be able to speak to someone who actually does under-stand from experience!
Polychondritis Educational Society...
To Better Understand Relapsing Polychondritis
The diagnosis of Relapsing Polychondritis can be a scary and daunting experience. It is important to understand and to be able to communicate about your disease to both health care professionals and to your loved ones.
