How I’m grappling with symptoms of 3 more autoimmune disorders

Now I'm awaiting one diagnosis, preventing another, and fearing a third

Jennifer van Amerom avatar

by Jennifer van Amerom |

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My health situation has become incredibly trying recently. I’m hesitant to shed any tears because I fear they won’t stop.

When I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD), I was told I might face one or more additional autoimmune diseases in my lifetime. Initially, this warning seemed like a mere possibility, but as time has passed, it’s proven to be my reality.

Additional diagnosis: Lupus

Just a couple of years ago, my neurology team began considering that I might also have lupus. The challenge in confirming that diagnosis was my ongoing treatment with immune-suppressant medications, identical to those prescribed to lupus patients.

Nonetheless, my medical team is confident I have it. Strangely, this revelation didn’t bother me, perhaps because it didn’t entail any further changes to my daily life.

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Additional diagnosis: Diabetes

When my husband, Mike, and I embarked on our journey to start a family, we turned to in vitro fertilization to welcome our daughter, Sophie. To safeguard my health from NMOSD, I was prescribed a high dose of steroids throughout the pregnancy.

Unfortunately, they led to the development of gestational diabetes, a condition I long feared, considering that it’s prevalent on both sides of my family.

Thankfully, I’ve avoided a continued diabetes diagnosis thus far. But I’m confident in my ability to manage it should it become a part of my health journey.

Additional diagnosis: Relapsing polychondritis

In a recent column, I shared my ongoing battle with what I believed to be a severe sinus infection. As it turns out, I was mistaken; the culprit was, and is, pneumonia. I now find myself on antibiotics, grappling with a level of discomfort that even someone like me with a high pain threshold will struggle to bear.

The swelling of cartilage on one of my ears initially seemed connected to the sinus infection. Whatever the cause, this external, visible problem with my ear triggered in me a surprising emotional response. I’ll admit to a certain vanity; thus, my ear’s appearance was making me distressed.

After consulting with a nose, ear, and throat specialist, however, the diagnosis took an unexpected turn. I was told I have relapsing polychondritis, yet another rare and degenerative autoimmune disease. This condition is characterized by recurrent inflammation of cartilage throughout the body, and that symptom, understandably, concerns me.

Where else is in my body is there cartilage that might be affected? In addition to my ears, my larynx, trachea, and the bridge of my nose may weaken. The aortic valve, one of the heart’s four valves, may also be affected, which I’ve read could give me a life expectancy of five to 10 years.

That last symptom sends a shiver down my spine. While I’m not one to easily buy into stray information on the internet, I have trouble ignoring the cumulative effect of predictions of life expectancies. I find myself grappling with the chance that, at some point, they might all catch up with me.

In just five years, Sophie will be on the brink of high school graduation, preparing to embark on her independent journey into the world. Looking ahead to a decade from now, I’ll only be crossing the threshold into my 50s.

During these challenging days — when my loved ones share that knowing look, a silent understanding that only NMOSD patients truly comprehend — I gently remind myself and all of us that not every day is a good day. Lately, I’ve been repeating this mantra more frequently.

I’m curious about the experiences of other NMOSD patients. How do you navigate the complexities of accumulating autoimmune disorders, and how do you all continue to forge ahead with a spirit of resilience and optimism? Lately, I’ve been lacking that ability a little.

Note: Neuromyelitis 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 providers 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 Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.


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