Sarcoidosis Update

As you may or may not know, two years ago I was diagnosed with sarcoidosis. It has been a while since I have given an update.

What is sarcoidosis?

You are not alone in not knowing. Most of the people I talk to have not heard of it as it is a fairly rare disease. That is why I like to blog about it from time to time.

Sarcoidosis is an inflammatory disease that can affect any part of the body. You can find out more here. Interestingly, it is mostly found in black women under forty, while I am a white man over forty.

At the time I was diagnosed, I felt like I was dying. I was very sick and even the doctors thought that I had lymphoma. While I was thankful for not having lymphoma, sarcoidosis is not the easiest thing either.

In most cases, people go into remission after a round of prednisone. That is not my experience. While I am doing much better than I was two years ago, I still have symptoms. I still have joint and muscle pain. Muscle relaxants make them barely noticeable, but when I am off them (as I am at the moment), I feel pretty old. I also experience fatigue. I can sleep 8-9 hours at night, have a nap in the morning and still feel tired in the afternoon.

More bothersome than those symptoms are my eyes. I often hear the media describe sarcoidosis as a lung disease. It is not a lung disease, even though the lymph nodes in my lungs are enlarged. It can affect any part of the body and was originally understood as a skin condition (hence the name).

The sarcoidosis regularly affects my eyes, which results in redness and severe sensitivity to light. There could be permanent damage without treatment, which is why I go see the eye doctor as soon as it happens. Still, it has left me with some pretty bad floaters. These are not just a couple of dots but rather dozens of dots, plus a ring in each eye and a line in the middle connecting the rings. It is so bad that I actually volunteered to get a needle stuck in my eye (this has not happened yet).

None of this is meant as a complaint. I simply feel that if people do not know about sarcoidosis, someone needs to tell them. That is what I am doing.

I am thankful that I am doing physically well. I am able to work and I am looking forward to hopefully starting a full-time job soon. In a way sarcoidosis is a gift that reminds me to not take my health for granted.

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