Throughout my career in healthcare communications, I’ve had the opportunity to learn about several of the more than 6,000 rare diseases that, taken together, affect approximately 25 million Americans – and have often thought, “I hope no one near me is directly affected by this disease – or any disease for that matter.”
Rare diseases are those that are extremely uncommon – ones that affect less than 200,000 people in the U.S. – and often have such low prevalence that the average doctor would most likely not run into more than one case of that disease in their career, if ever.
When I recently began working on sarcoma outreach, I again thought, “I hope no one close to me has sarcoma.” This time, my wishful thinking didn’t work. I found out not one but two people I work with have first-hand experience with sarcoma. One colleague’s father recently underwent surgery, after receiving chemotherapy, to remove a sarcoma tumor. To date, he is doing well and continues to have frequent check-ups to assess new growth. Another coworker was not quite as fortunate. Her uncle lost his battle with a rare form of sarcoma within six months of his diagnosis. As you read this post, look around and talk to your friends, relatives or coworkers. You, too, may find out that a rare disease such as sarcoma is not completely unknown to those around you. (more…)