April is Sarcoidosis Awareness Month – Dedicated to My Brother

In honor of April being Sarcoidosis Awareness Month and today, April 13, being World Sarcoidosis Awareness Day, I thought I’d break my silence on what happened with my younger brother and his death.

I’ve never written about what happened with my brother Cody in 2012.

Today’s post is dedicated to Cody, to all patients who suffer from sarcoidosis, and to Sarcoidosis Awareness Month. It’s part of A Chronic Voice’s April 2021 chronic illness blogger meet-up.

DAUNTING
It has been daunting to write about this topic. How do you write about the death of a sibling?

It’s impossible to tell you the range of emotions I’ve experienced since his passing on September 29, 2012. It has taken me this long to even mention it here on My Several Worlds.

Cody passed away suddenly and unexpectedly in September 2012 at age 33. I cannot describe how awful it was to learn by phone at 4pm on a Sunday in Taiwan that my brother had passed away in Canada. What my parents went through was even worse because they experienced a parent’s worst nightmare when they received a call in the middle of the night informing them of his death.

My family is a 30+ hour journey away. I was on a plane the next day. I don’t remember much aside from boarding the plane in complete shock, crying all the way from Taiwan to the US, and finally having a breakdown at some airport in the US because immigration was backed up.

Someone took pity on me and allowed me to jump the line so I could make it home in time to be at my brother’s funeral.

I can’t imagine anything worse happening than losing my youngest sibling. It is one of the worst moments of my life. And then, of course, spending a month at home with my family to bury my brother and help my family clean his house out – all of this on top of being ill and none of us understanding what had happened or why he passed – it was heartbreaking.

Worst of all, I had talked to my brother two weeks before he passed when he called to tell me his girlfriend was pregnant.

I have a gorgeous niece now and her name is Codi-Lyn, but the tragedy is that she never met her dad.

Codi-Lyn – One year after my brother’s death
My mom, Codi-Lyn, and me

We found out a few months later after his autopsy that he had sarcoidosis.

Because he didn’t have access to a primary physician in his area, sarcoidosis was never detected. Cody was in pain, but he wasn’t one to complain.

When he mentioned pain, we attributed it to his job in manual labor – as did he. Just like every other chronic pain patient, he also came up with excuses for his pain and downplayed it because he didn’t know better.

Cody was a gifted welder and spent a lot of time doing hard, heavy, manual labor because he also lived off the land. I can’t imagine, knowing what I go through myself, how he got through his days with that kind of pain.

GROUNDING

A Chronic Voice meant for us to use grounding in a different way, but I’ve chosen to use this prompt to educate and provide a solid grounding in sarcoidosis.

Most people I talk to have never heard of sarcoidosis, but it seems to be opposite to what I have with Ankylosing Spondylitis. In my case, AS attacks bone and joints. In my brother’s case, his disease attacked his organs and they found granulomas in all his organs.

Here are some basic facts for Sarcoidosis Awareness Month:

  • Sarcoidosis is an inflammatory disease
  • It causes cells to gather together into clumps called granulomas
  • Granulomas form in organs
  • An organ’s function can be impaired when too many granulomas have formed inside an organ
  • Sarcoidosis can affect any organ in the body. In my brother’s case, it was in his brain, lungs, lymph nodes, heart, kidney, liver.
  • Sarcoidosis can cause skin and eye damage
  • In 90 percent of cases, lungs and lymph nodes are impacted the most
  • Sarcoidosis is most common in adults between the ages of 20 and 40
  • Women are more likely than men to develop sarcoidosis
  • Occasionally, sarcoidosis patients develop granulomas and inflammation in their heart, which can trigger abnormal heart rhythms and heart failure. This condition is known as cardiac sarcoidosis.
  • According to the CHEST Foundation, there are more than 200,000 people in the US living with sarcoidosis
  • Many patients never have symptoms. Sarcoidosis is often ‘caught’ by accident during an x-ray for some other reason
  • In some cases, the disease improves by itself
  • However, your overactive immune system may lead to flu-like symptoms such as cough, shortness of breath, night sweats, joint pain and fatigue
  • Up to 30% of patients with sarcoidosis have symptoms improve without treatment
  • Even if there are no symptoms, patients with sarcoidosis should have breathing tests, electrocardiogram, blood tests, and an eye examination to address potential problems that might need to be addressed in the future
  • The color of awareness for sarcoidosis is purple.

Sarcoidosis is a confusing disease, and symptoms can come and go – making diagnosis difficult. With good medical care, most cases of sarcoidosis can be well-controlled. And with a rare disease like sarcoidosis, nearly as important as healthcare is the emotional support that comes from learning and leaning on others impacted by this difficult disease.

Ginger Spitzer, Executive Director of Foundation for Sarcoidosis Research

SPRINGING

Writing this post, I have a lot of emotions springing up and welling over. I’ve cried and rewritten this many times. I actually started this post on April 1st and here I am getting ready to publish this post on the 13th in his memory.

I still miss him so much and wish his little girl had had a chance to meet her dad.

SUSTAINING
Today’s post is meant to sustain me, I guess. The thought of having a piece of him – his daughter – with us sustains my family and it keeps his memory alive for all of us. All we can do is continue remembering him and keep telling her about her dad and showing her photos.

The thought of being able to support other sarcoidosis patients or at least being able to use My Several Worlds as as jump off point for patients who are newly diagnosed helps me feel a bit better.

If you’re looking for resources and organizations to assist you with questions about sarcoidosis, here are some great places to start:

April Is Sarcoidosis Awareness Month

Stop Sarcoidosis – “The Foundation for Sarcoidosis Research is the nation’s leading nonprofit organization dedicated to finding a cure for this disease and to improving care for sarcoidosis patients. Since its establishment in 2000, FSR has funded numerous domestic and international research efforts and has worked diligently to provide resources to thousands.

As a rare disease, sarcoidosis is all too often misdiagnosed and misunderstood. Please join us to help raise awareness and create a better understanding of how sarcoidosis impacts you, those you love, and the community each and every day.

Sarcoidosis UK – “SarcoidosisUK has four main goals – to provide quality information, to provide meaningful support, to increase awareness, and to fund research towards a cure. However SarcoidosisUK’s main goal is find a cure. We have funded a significant piece of research into understanding more about sarcoidosis each year for the past 3 years. We are going to fund more research this year, next year, and every year until we have found a cure for sarcoidosis.

Stronger Than Sarcoidosis – “Learning that you have sarcoidosis can be scary. Learning to live with the diagnosis — to manage not only the medical components, but the emotional toll it can take on literally every aspect of life — can be especially daunting. That’s why we’re here – to share our experience, and to help make yours a little easier. You are not alone.

Cody, you will continue to be in my thoughts. You are with me every day.

I’m sorry I can’t write more or get more personal with this post. But if readers have questions, please feel free to leave a comment.

LUXURIATING
I’m ending with a slightly fun and positive update by telling my readers that I’m moving this week! We’re looking forward to luxuriating in our new home with my new rooftop patio and garden! By then I should be back to my regular blogging schedule.

Thanks for being here today to read this.

I miss you, brother.

My mom is on the right and my brother is seated next to her. I’m sitting next to my grandmother. My dad is on the left. My sister is sitting next to my Bumpa.

Books for Sarcoidosis Awareness Month

Tthese books are informative reads about Sarcoidosis:

  • Backbone: Living with Chronic Pain without Turning into One by Karen Duffy
  • I HAVE SARCOIDOSIS BUT IT DOESN’T HAVE ME: My fight and advocacy with Sarcoidosis by Frank Rivera
  • Walking in Silent Pain: Autobiography about Strength & Resilience (My Life as a Rare Disease Sarcoidosis Patient, Before and During) by Frank Rivera

The author, Frank Rivera, is a friend of mine. Here’s his post for World Sarcoidosis Day. He does great work. Please give him a follow!

Post Author: Carrie Kellenberger

I'm a chronically ill Canadian who has been living in Asia since 2003. I moved from China to Taiwan in 2006. I'm an experienced businesswoman and have worked in many leadership positions in Asia. In addition to my own work, I've been writing professionally about Asia, travel and health advocacy since 2007, providing regular content to publishing companies and travel publications in Asia and North America. I started writing about my health journey in 2009 after being diagnosed with Ankylosing Spondylitis. In 2014, I was diagnosed with Fibromyalgia and ME/CFS, which came with other massive health issues. These diagnoses were the start of my journey as a health advocate and patient leader. Since then, My Several Worlds has been recognized worldwide as a top site for AS, fibromyalgia, and chronic illness by WEGO Health and Healthline.

5 thoughts on “April is Sarcoidosis Awareness Month – Dedicated to My Brother

    Anne

    (April 13, 2021 - 9:17 pm)

    My heart goes out to you and your family. I’m glad you wrote this in memory of your brother, it’s so sad he never got to meet his daughter. I have never heard of sarcoidosis so well done for raising awareness too. I’m sorry it proved fatal for your brother. I too lost my little brother when he was 34, but he took his own life and we can’t talk about him because of the things he did. He will always be that child I grew up with though. healing thoughts x

      Carrie Kellenberger

      (April 15, 2021 - 2:04 pm)

      Anne,

      Thank you so much. My mom got in touch as soon as it went up. I was afraid that maybe writing about him might hurt her in some way, but I think we both found it helpful and therapeutic. My folks were happy that I had raised some awareness for a disease that gets very little awareness. His daughter looks just like me actually! We’ve been mistaken for mother and daughter, and I find that quite funny because she’s just like my brother. We had very different personalities. Sometimes she’ll say something or do something and I swear it’s like he’s sitting right there next to her.

      I’m so very sorry to hear about your brother. Sending you great, big hugs and many thanks for stopping by!

    Catherine Green

    (April 16, 2021 - 1:59 am)

    Thank you for sharing your personal experience. I was not aware of this disease so you are doing a valuable job raising the issue. Enjoy time with your beautiful niece!

    Katie Clark

    (April 18, 2021 - 8:25 am)

    Oh, Carrie. I know you have mentioned losing your brother and missing him. What a handsome young man he was with so much to look forward to. His daughter is certainly a light. I have never heard of Sarcoidosis. Thank you for writing this very difficult post. It’s bringing awareness and honoring a very special life lost due to not knowing about this disease. Sending you much love, friend. Maybe you can light a candle on your patio for your brother. He will be with you always.

    Pain Reaction

    (April 25, 2021 - 11:16 am)

    This is absolutely heart wrenching, Carrie. I completely understand why it took time to write this post. I have heard of sarcoidosis in passing, but knew very little so thank you for sharing this. My husband’s name is Cody so it was hard for me to not think of him while reading this. I worried constantly while I was pregnant that something would happen to him and my daughter wouldn’t know her father. It was obviously pregnancy anxiety, but as you know, anything can happen suddenly. I certainly don’t mean to make this personal, but I truly feel for you and your family. Gentle hugs 💜

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