This Is What Makes Me Rare with Sarcoidosis

Kate Spencer avatar

by Kate Spencer |

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Rare Disease Day

I have a rare health condition called sarcoidosis, which causes extreme fatigue, joint pain, and difficulty breathing. It can affect all of the major organs, including the lungs, heart, eyes, and skin.

Sarcoidosis affects about five in 100,000 Caucasians in the U.S. For African Americans, that number jumps to 39 per 100,000. Because it presents itself in fewer than 200,000 people in the U.S., it is considered rare.

Living with a rare health condition is frustrating. I have struggled with feeling puzzled, different, and lonely. Sarcoidosis affects my relationships with friends and family members. It has also made having a full-time job a distant memory. Overall, my health has led to alterations and adjustments in every aspect of my life.

But there’s another side to this rare condition: Living with sarcoidosis has taught me that I’m tougher than I had ever imagined. As a result of my diagnosis, I’m not afraid to live life to the fullest, each and every day.

In some ways, I believe I’m lucky that I wasn’t diagnosed with sarcoidosis until I reached adulthood. As a result, I know life before sarcoidosis and life after it. In many ways, I’d prefer to give the diagnosis back. But having this rare condition has taught me what is truly important in life. That’s a lesson I may not have learned, especially so early, without the experience of this rare disease.

I have always been an ambitious and self-motivated person. And I have even more drive and determination since my diagnosis with this rare condition. I continue to strive to succeed in ways that are important to me, and I refuse to give in to health setbacks.

I might have a rare condition, but I’m not a victim of my health. Despite my physical limitations, I believe that I’m relatively strong, both mentally and emotionally. I’m still kind, compassionate, and empathetic toward others, maybe even more so than I was before my diagnosis. I have been told that I’m a great listener and a loyal friend.

While, technically, living with sarcoidosis makes me rare, I would like to think that what makes me rare has little to do with the disease at all.


Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sarcoidosis.


Zanie Rabhaa avatar

Zanie Rabhaa

I too live with sarcroidosis. I have been struggling with this disease over 7 years. I have never gone in to remission. I have had 4 surgeries on my eyes, bladder and kidney surgery, a hip replacement and my uterus removed due to the disease. I have it all over my body and my skin is effected and my teeth are falling out as well I now have problems with my stomach. my lungs are in bad shape I am on two different inhalers and I see every type of specialist in total I have 12 doctor's.

they have tried me on every different types of medication possible and nothing works. on top of it the disease has now attacking my nerves and I already started losing feeling in my hands and legs.

just 2 weeks ago they discovered my bones in my back are damaged as well. I hate this disease I even am going to Remicade infusions with cortisone every 4 weeks and it does nothing for me. the worst thing is my eyes I am losing my eyesight even though they did surgeries to try and fix it but it has come back even stronger.

sometimes my tiredness makes me sleep for 3 days without even waking up to use the bathroom. I have lost my whole life from this disease. I was a computer science engineer and since I can't see well I lost my job.
I just want to say I know how anyone feels with this disease. I hear u and understand. I am happy u have friends unlike me the only friends I have are my 2 cats I lost all my friends since I am living in a bubble since my immune system can't fight any type of viruses even a cold could put me in high risk.
anyways just want to say ur not alone.
take care regards


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