Sarcoidosis: The Eyes Have It
I have no intention of making this blog a place to complain about my health issues. However, sarcoidosis is so poorly known that I feel obligated to educate people about it. I recently blogged about sarcoidosis and this time I will share a different side of my experience.
Most people have not heard of sarcoidosis. If they have, they likely think of it as a lung disease. I have even heard a doctor describe it as a lung disease.
Sarcoidosis is not a lung disease.
Sarcoidosis is often thought of as a lung disease because the lungs are the most likely place for it to attack and that is the way many people are diagnosed. The first step in my diagnosis was a routine x-ray of my lungs that showed something wrong. Sarcoidosis in the lungs is called pulmonary sarcoidosis. That is what I have.
But that is not all.
This week I have been suffering from sensitivity to light. With it being sunny and snowy, it has been a bad time. Even indoors I have experienced pain. I have had this before and I have known that there are traces of sarcoidosis in my eyes. However, I was stubborn and didn’t do anything about it.
Until this morning. When I got up this morning, there was a bright light like a flash in the middle of the sight in my left eye. All around that light was a white fog. When I covered my right eye, I could hardly see anything. That was enough to cure me of my stubbornness. I went to my optometrist, who sent me to an ophthalmologist at the hospital. Sure enough, my eyes were not doing well. The pressure on my eyes was about twice the maximum of what it should be. The doctor confirmed that the sarcoidosis is in my eyes. This is called ocular sarcoidosis. I now have that too.
No need to panic though. I am on drops that should take care of it fairly quickly. The bad news is that the doctor confirmed that this will happen regularly because of the sarcoidosis.
I share all this to say that sarcoidosis is not just pulmonary sarcoidosis. Sarcoidosis is ocular sarcoidosis and many other kinds as well. In fact, sarcoidosis was first discovered as a skin condition (hence sarc, Greek for flesh).
In conclusion, repeat after me:
SARCOIDOSIS IS NOT A LUNG DISEASE.
Yes sarcoidosis is a pain. I have problems with eyes and skin as well.
I have had sarcoidosis in my right eye, caused glaucoma, had to eventually have eye surgery to relieve the pressure after a couple years on eyedrops
My sarcoidosis was first diagnosed on my skin, then my lungs, spleen liver and recently, my lymphatic system. It can invade any organ in your body (your skin is the body’s largest organ). It causes the organs to harden and eventually stop working. It’s mainly deemed an inflammatory/autoimmune disorder.
Sarcoidosis is a full body disease, not just a lung disease. It can strike anywhere. I was first diagnosed by a skin biopsy, and then given a chest xray to discover it was in my lungs. (I’d been having bad trouble with my lungs, but kept getting diagnosed with viral bronchitis.) My lungs have actually stabilised now, but my skin continues to worsen, and now my eyes are causing concern. Back to the hospital…
I will pray for you and your family, Steve.
Judy
Thank You for sharing your experience. I to have sarc mainly effecting both of my eyes. Ive had 2 flairs spanding a 3 year time frame. The amount of damage done during each flair is over whelming. And Dr who cant seem to get it under control when the sarc is active is the most maddening. Thankfully all is quiet for now. But, at times I feel if I am in a race between loosing my vision and becoming financially crippled in the battle of trying to maintain a quality of life.
Sarcoidosis is NOT just a lung disease.
This is why I am trying to raise awareness. Many people define sarc as just not lymphoma. Sarc is a serious disease that affects the entire body. I hope your quiet time continues.