Diagnosed With Sarcoidosis

Hello all,

Yesterday I was diagnosed with sarcoidosis (sar"koi-do'sis). What the crap is sarcoidosis? Yup, that’s what I said!

Simply put sarcoidosis is inflammation that produces tiny lumps of cells in your body and organs which look like tiny grains of sand. These tiny clumps can stick together and make bigger clumps. When many of these clumps grow together they can cause problems with how your body works. This is especially true in joints and organs. Also the inflammation, although not large, is very painful.



Sarcoidosis can grow anywhere, but are typically found in the lungs. It can also affect your skin, eyes , liver, spleen, brain, nerves, heart, bones, joints, etc. So far for me it has affected my ankles to the point where I can’t walk without burning pain and my knees with mild pain. It also shows up very clearly on a chest x-ray. Nothing else has showed up for me yet, and I am really hopeful that nothing will happen to my eyes.

Sarcoidosis for many people can be mild. The inflammation may get better on its own and the clumps (sand) may stop growing or even shrink. For many people symptoms can go away in a few years. I am really hoping this is the case with me.

For others flare-ups come and go for a very long time, and for yet others it may slowly get worse over the years and cause permanent organ damage because of scaring.

The fortunate thing is that sarcoidosis is not cancer, it is not contagious , although it is linked to genetics. My father had what sounds like stage 2 sarcoidosis. I am hoping that none of my six kids will have to deal with this. I have two boys that are deaf and have cochlear implants. I certainly hope that of anyone they don’t have to deal with this, especially since this can cause eye damage!

One of the best sights I have found that explain everything about sarcoidosis simply and without too many medical terms is the National Heart Lung and Blood Institute found here. This site has really helped.

So now that I know what I have now what?

The biggest thing is that this has explained a lot of things that have been happening to me over the last while. Especially the pain in my feet and knees and why I have been so exhausted in the mornings. (Another side effect) In some ways it is good to know that this is caused by an illness because at least then I can understand what is going on and treat / deal with it better.

Next steps for me are to get to a specialist and see more fully where I stand and how much this is going to impact me and my family. I also need to do some more research on the internet and perhaps talk with others who have had experience in this. I have started some medicine that will make you gain weight so I will need to exercise my upper body or do whatever I can to stay fit. And most importantly I need to see how to adapt so as to not negatively impact my wife, my kids, my work and my life.

So far I have had tremendous support from everyone. Family, friends, co-workers and my boss have all been very helpful. My bishop even insisted on going to the hospital with me since my wife is down and unable to come due to recovering from neck surgery.

With this kind of support, the medical help I can get and my determination to take this head on, I think that the future holds promise!

Michael