As a Rehabilitation Counselor and a promoter of health care awareness, I am often very interested in learning about rare diseases that influence the lives of all populations. This past month I attended a family function that involved visiting some friends of the family. The event was very exciting to me because the social activity gave me the opportunity to reconnect with old friends.

I was especially excited to see Mary Sparkman at the party. Mary has four older brothers and four sisters (two older ones and two younger ones). Mary and her family have always been like a second family to me. Mary, Anna, and Natalie were all schoolmates of mine when we attended grade school together. Mary would sometimes help with lunch in our high school cafeteria. She always seems very happy to see me, so when I saw her at the party last month, I decided to write my next article about her. My decision to write this article was based upon my friendship with Mary, but also, my desire to raise awareness about her rare disease.

Mary has Relapsing Polychondritis (RPC), a rare episodic and progressive multi-system inflammatory rheumatic disease involving all types of cartilage and connective tissue, which can be life-threatening, debilitating and can be difficult to diagnose. RPC affects cartilage in multiple systems, such as the ears, nose, larynx, trachea, bronchi and joints. In addition, it can affect proteoglycan rich tissues, such as the eyes, aorta, heart and skin. Central nervous system involvement has been noted in a minority of cases. Mary’s case seemed to start in her ears, to her nasal passage, and the disease attacked the cartilage in her larynx, which forced certain physicians to implant a trachea tube in her throat. Mary is able to speak clearly, but the disease has made her voice softer. Despite this debilitating disease, Mary and her husband Steve and their one son (Steve Jr.) are determined to live their lives to the fullest potential in Lancaster, Texas.

According to several websites about Relapsing Polychondritis (RPC), the average age at the onset for this disorder is between 41 - 51 years; there is no sex or race predilection and it can occur at any age. According to Mary, there were approximately 500 known cases within the US when I was diagnosed and now there are 1,000 known cases within the United States. Mary also states that, "this disease is so rare that the State of Texas does not have any local physicians to treat my condition. I had to go to California for a treating physician." Mary further states that, "many people in the general public are unaware of this disease and many believe that my trachea tube is due to cancer related conditions."  Mary is fortunate to be very active with the disease, but the condition did force her to give-up her job as a childcare worker. She says, "It was not good for me to be around kids because they get sick a lot, and I cannot be around germs a lot." 

Mary is very thankful to have Steve by her side because his support has made the disease easier. Mary also feels that the disease has brought her closer to her family. Mary’s mother (Isidra Reyna) and father (Angel Reyna) now live behind her in a brand new house. "It was time for mom and dad to get a new house, they lived in the old house for over 40 years", she says. I can testify to that statement because as a child my family and I would visit their family, and we would often enjoy games and feast on all the best Mexican food in Lancaster. These traditional foods are often missed by my distant living arrangement, but the memories of those dinners still remain in my heart. Mary says that "having my family around makes my disease easier to manage. If I need help, then I can always count on them to help me. I use my parents as role models and my faith in God to help me cope with the disease. I use a lot of prayer and meditation to guide my life."

According to this website www.polychondritis.com, medication treatment is based on our understanding of other connective tissue diseases or autoimmune diseases."  

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