It’s been over ten years since the beginning. Presenting as a mystery, wrappped in an enigma, wrapped in a disease that has no end; but it did have a beginning. Back in Seattle, the summer of 2002 at Bally’s Fitness, I noticed my breathing becoming labored, but nothing I couldn’t power through. It was the start of something. Months and years passed. A host of symptoms came and went. It was still difficult to breathe on occasion, but nothing to set off alarms — yet. Then they appeared. Two spherical, pea sized lumps on my forehead. Hard as rock. Impervious to topicals or antibiotics. Persistent. Protruding. Ugly. Once removed and biopsied — a mystery was unfolding. It was difficult to find capable investigators and advocates for the truth.
Here I am over ten years later. This waiting room not much different from numerous ones I had previously occupied — waiting for answers. The people here though, were much different. But that could be more about locale, this being Newark, NJ rather than Seattle, WA. Many more people of color. But then again statistically, I’m the odd man out in this group — here or in Seattle. The high dose of reality does not escape me, nor the irony. But we are all a rare breed — living the Sarcoid life.
Who Gets Sarcoidosis in the General Population?
Anyone can get sarcoidosis. It occurs in all races and in both sexes. Nevertheless, the risk is greater if you are a young black adult, especially a black woman, or are of Scandinavian, German, Irish, or Puerto Rican origin. No one knows why.
Because sarcoidosis can escape diagnosis or be mistaken for several other diseases, we can only guess at how people are affected. The best estimate today is that about 5 in 100,000 white people in the United States have sarcoidosis. Among black people, it occurs more frequently, in probably 40 out of 100,000 people.
Overall, there appear to be 20 cases per 100,000 in cities on the East Coast and somewhat fewer in rural locations. Some scientists, however, believe that these figures greatly underestimate the percentage of the U.S. population with sarcoidosis.
Sarcoidosis mainly affects people between 20 to 40 years of age. White women are just as likely as white men to get sarcoidosis, but black women get sarcoidosis twice as often as black men.
Sarcoidosis also appears to be more common and more severe in certain geographic areas. It has long been recognized as a common disease in Scandinavian countries, where it is estimated to affect 64 out of 100,000 people. But is was not until the mid-1940’s when a large number of cases were identified during mass chest x-ray screening for the Armed Forces that its high prevalence was recognized in North America.
Although sarcoidosis can rarely occur in families, there is no evidence that sarcoidosis is passed from parents to children.
For the longest time, I had been asymptomatic. In the past year though, things may have changed. This overpowering feeling of lethargy had slowly taken over my life. I’ve been here before. This is how it started — an overpowering and constant feeling of tiredness. I spent the last year trying to figure out why; with an assist from a multitude of specialists. Sadly, all of them were left scratching their heads. They also knew very little about Sarcoid, save my endocrinologist Dr Kargutkar. Being mid way through another summer of feeling like shit, and having no real answers or a cure for this lethargy … I decided it was time to find a new Sarcoid specialist. Not having the resources of my former UW Med Sarcoid specialist and advocate Dr Ganesh Gaghu at my disposal — it was time!
So there I sat in the waiting room of Dr Andrew Berman at Rutgers Doctors Office Center. I found Dr Berman through a Google search — how else! Long story short — I’m glad I did. If nothing else, it was time to have someone else, other than myself, being an advocate, and putting any symptom through the Sarcoid filter.
Dr Berman did his initial ‘meet and greet’ with me on a day he doesn’t usually see his Sarcoid patients. That, in and of itself, tells me a little something about this man. We sat and and we talked for over an hour. He was going through a detailed list of questions, and entering answers into his database. I sure do love a man/doctor/researcher who is thorough! He also did not let me wander in an answer. If I did, he let me finish my thought and brought me back to point. Yes. He gave good interview! He also has a good bedside manner, knowing I’m concerned, and never talking down to me. Also picking up on, and commenting on my accumulated Sarcoid knowledge. Yeah … he’s a keeper!
When we were done, he explained to me, he didn’t want to start with a host of tests. He said, “Though you do belong to this group, I want to get a look at all the previous data from your Seattle doctors. No need to reproduce tests, and the data will give us a better indication of where you’ve been and where we will go to look at your new symptoms and whether they are Sarcoid related. When I get all the info, you and I will sit and review that data. I will then decide what tests will be needed to proceed.”
Oh yeah … I like this man! So with that, I have a job to start come Monday. I need to contact UW Med and all my Seattle doctors to fax Dr Berman’s assistant, Candy, all my Sarcoid related records. That will take some doing! But I’m certainly up for the task at hand — getting answers — and using the old data to inform the future data. I don’t mind being a Sarcoid lab rat. There are so few doctors and researchers gathering data on Sarcoid. If anything good can come from this, I am ready, willing, and able to do what needs to be done! Stick me, poke me, examine me , question me, look deep inside me! I want answers, as much as, if not more than you do!
I know that tracing my ills to Sarcoid, won’t really help me in any curative way. What it will help with is narrowing down and filtering out all other possibilities. So even if my lethargy is not Sarcoid related, Dr Berman will do all he can to see if it can be cured. He also has an army of colleges, specialists, and fellow reserchers to coordinate care with at Rutgers and who will report back to him. This has been what I’ve been waiting for here in New Jersey — the one doctor and Sarcoid specialist/researcher who can carry the torch passed from Dr Raghu at UW Med to help light the way. I want answers. I want relief; even if that relief is only psychological. I’ll know I’ve done all that I can possibly do to get back to the way I felt only a year ago. That is my mission. That is the new journey.
The game is afoot! It’s time to start looking for clues — again!