Rare diseases may create invisible handicaps

  • Published
  • By Laura McGowan
  • 88th Air Base Wing Public Affairs
Wright-Patterson AFB, OH --  February 28 is designated as Rare Disease Day. The National Institute of Health classifies a rare or orphan disease as one with fewer than 200,000 cases in the country. This day is not one of celebration, but one of education. It is a day that would have gone by in a blink for me until I became one of the 200,000.

Already having a service connected disability, I understood my limitations and side effects of my medications. But for months on end, I started experiencing severe pain in my bones and muscles. On top of that, I had fatigue to the point of not being able to drive without fear of falling asleep behind the wheel.

In 2009, I made an appointment with a rheumatologist, and she did blood work and got my medical history. They did X-rays and many tests. When she got the blood work back, she recommended that I get a lip biopsy which her office scheduled. I went to the doctor's office expecting them to get a couple of pinches from my lower lip. Instead, the doctor cut a couple of large portions from my lip, which healed after a couple of weeks, but I have numbness on that side even today.

My doctor informed me that I had Secondary Sjogren's Syndrome and fibromyalgia. I had no idea what that was, but she gave me a chest X-ray so they could have a baseline for if and when things might change. She also gave me some brochures and said that there is no cure for SS, but they could treat the symptoms and complications that may arise from the disease, including myeloma.

I felt a little sorry for myself, so I took the reading materials and went straight to Cold Stone and got a Love It sized treat. I drove home, took my pain meds and started doing research on this Sjogren's Syndrome that chose to make me a member of its club.

My research taught me that the dryness in my mouth and eyes were symptoms of the disease. I always thought it was due to my other medications. I found that it is an autoimmune disease that attacks the moisture producing glands, and it treats healthy tissue as if it were a dangerous invader to the body. The swollen gland on the right side of my neck was also due to this disease and would likely be permanent. The other symptoms of pain (minor to very severe), fatigue, blurry vision and difficulty swallowing would likely be hosts to my daily program--although I've found some days to be better than other days.

Because my medical conditions are not necessarily visible as someone who is in a wheel chair or someone who has a seeing eye dog, sometimes others may not understand. It's understandable. I talked with my direct supervisor and another co-worker about these conditions. It helps that someone knows a little about a person's medical conditions in case there's an emergency. It is also helpful if you have to miss work due to your medical conditions.

If you are a member of the rare disease club, understand that you are not alone even if you feel like you are alone. Talk to someone; it will help. Also, treat yourself to some ice cream. It may not heal the pain, but it sure tastes good!