This Is My Story


I am a person, like many, living with chronic disease. My disease happens to be one called Sarcoidosis which is considered “rare” but I am meeting more and more people recently who have it or know someone who has it. Perhaps that is only because I now have it and I am paying attention. Isn’t that always what happens. We don’t pay attention to something until it personally impacts our own life.

“Sarcoidosis (sar-koy-DO-sis) is a disease of unknown cause that leads to inflammation. This disease affects your body’s organs.

Normally, your immune system defends your body against foreign or harmful substances. For example, it sends special cells to protect organs that are in danger.

These cells release chemicals that recruit other cells to isolate and destroy the harmful substance. Inflammation occurs during this process. Once the harmful substance is gone, the cells and the inflammation go away.

In people who have Sarcoidosis, the inflammation doesn’t go away. Instead, some of the immune system cells cluster to form lumps called granulomas (gran-yu-LO-mas) in various organs in your body.” (Source: NIH – National Heart, Lung and Blood Institute).

The clusters of cells are often harmless…until they interfere with proper organ function. And symptoms range from mildly annoying to debilitating. They can include coughing, shortness of breath, fevers, unintended weight loss, joint pain, bone pain, brain fog and forgetfulness, muscle pain, back pain, stomach issues, chronic sinus infections, skin lesions, itching, sun sensitivity, enlarged and painful lymph nodes, heart irregularities, eye issues and fatigue. There are likely even more symptoms than listed. It really depends on the severity and progression of the disease and which organs are involved for any given patient.

Sarcoidosis is often called a snowflake disease because each person effected by it has such an individual experience with it. Some people are even asymptomatic, others go into remission and still others have a chronic more complicated version.

There is no cure and any treatment provided is aimed at symptom relief. Every treatment has complex side effects.

It all started for me when my husband got skin cancer. I decided after that to have a spot on my leg looked at. A biopsy of the spot came back as “probable Sarcoidosis”. At that time, my dermatologist didn’t make much of it. She prescribed some steroid cream and told me that I would be fine.

Because this is such an odd disease, one you’d only hear about on the TV Show House, I decided to look it up. And I was amazed that I actually probably had a lot of the symptoms but had justified them all away to other things. My cough and swollen glands…allergies. My fatigue…I work too hard. My aches and pains…I am getting old. You get the idea. So, I called my primary doctor who wanted to see me right away. After completing a pulmonary function test that showed my lung function was that of a 70 year old woman (I am 44), he immediately sent me to a pulmonologist.

From there I was poked, pricked, scanned and operated on for another year without a formal diagnosis.

Sarcoidosis is a disease of exclusion. It takes time to get there and in my case, as in many others, I was told that I could possibly have lupus, MS or cancer.

Finally after nearly 2 years and an open lung biopsy – one very unpleasant and hard to recovery from surgery, I got my diagnosis…Sarcoidosis. It is in my lungs, skin, lymph nodes, muscles, nasal passages and bone marrow. This disease can impact any organ of the body.

My symptoms happen to include shortness of breath, chest tightness, nerve pain, bone pain, joint pain, back pain, brain fog, fatigue, fevers, skin lesions, coughing, muscle weakness and loss of appetite.

I am currently being treated because I have active and now permanent organ damage to my lungs. My treatment includes taking a drug called methotrexate once a week. This is a chemo drug used in lower doses for Sarcoidosis with the goal of suppressing the immune system. I also use two types of inhalers – one is twice a day and is long acting and the other is a rescue inhaler for sudden symptoms or to be used before exercise. My treatment goal is not remission. This is unlikely. My treatment goal is to minimize further damage to the lungs and hopefully stay off oxygen for as long as possible.

Treatment for Sarcoidosis varies widely, doesn’t cure the disease and is not always necessary. Treatment depends on the severity of the disease progression and patient choice. Generally once an organ begins to show damage from the disease, treatment is warranted.

I’ve been writing about by journey for some time. And my family and friends who I have been bold enough to share my writing with have encouraged me to share it with the world.

Admittedly, I am a bit nervous but here goes and if it happens to help even one person, then I have done something good.