Written by Dana Rowland RT(R), RDMS, RMSKS, a sonographer at Michigan Medicine
Last year, I learned that the last day of February each year is Rare Disease Day around the world.
To many, this may seem like any other day, but to me, it means so much more.
I have a rare, life threatening condition called Addison’s disease.
Until recently, I never wanted anyone to know that I had this rare condition. I was afraid of what people may think and I didn’t want to be treated differently.
Addison’s disease is a condition brought on by the failure of the adrenal glands, which sit above the kidneys and secrete hormones.
The symptoms of Addison’s disease, also known as primary adrenal insufficiency, result from an insufficient production of two hormones: cortisol and aldosterone.
My body’s immune system mistakenly attacks my adrenal glands, damaging my adrenal cortex.
Because of this, I require constant steroids to replace the hormones my body doesn’t produce.
My Addison’s disease diagnosis
In 1986, when I was only 11 years old, I felt very ill and was experiencing significant weight loss, severe abdominal pain, hyperpigmentation, nausea, vomiting and unbearable headaches. (This was 38 years ago, and with an Addison’s disease diagnosis being so rare, you can only imagine how uncommon and unusual it was at that point.)
My parents had taken me to the doctor several times, yet no one could figure out what was wrong with me; I was always told that I had the flu.
I can recall suffering for a very long time, hoping it would finally come to an end, and that I would feel better.
I was 12 years old when I became so ill that my body shut down.
In my pediatrician’s office I felt lifeless with so much fatigue, nausea, vomiting and dehydration.
I felt as if I were dying, and little did I know, I actually was dying: I was having an adrenal crisis.
An adrenal crisis is a life threatening decrease in cortisol, which includes experiencing symptoms such as low blood pressure, low blood sugar, severe joint pain, severe abdominal pain, vomiting and confusion.
If left untreated, it can lead to shock, and even death.
I was taken by ambulance to the hospital, and, despite a full battery of tests, doctors were still puzzled.
Finally, I saw an endocrinologist and he diagnosed me with Addison’s disease.
From there I was started on steroids, which I still take daily, to replace the hormones my body no longer produces. And, in the events of illness, surgery, trauma or psychological stress, I have to increase my dosage.
Beginning life again with a rare disease diagnosis
Not many people were, or are, familiar with Addison’s disease, but at the time I found out I also learned that President Kennedy also had the condition.
This served as an inspiration to me as a teenager: If the president of the United States could have a primary adrenal insufficiency, which is affected by stress, then I can also do this, too.
With that example in mind, I resolved to play many sports in high school and remain active. I was even nominated for homecoming queen!
But even during exciting events, such as that, the physiological stress would induce symptoms, ultimately resulting in my needing to up dose my steroids to avoid having an adrenal crisis.
Pregnancy with Addison’s disease
When I was 24, I was expecting my first child, and I was very sick during that pregnancy.
I worked fulltime as a radiographer despite being frequently ill with nausea and vomiting, abdominal pain and overall malaise.
I tried to keep pushing myself because I wanted to be strong. My endocrinologist at the time told me not to increase my steroids because it would harm my baby.
But as a result, I’d then end up in the emergency room once a week with an adrenal crisis, being given fluids and steroids through an IV each time.
Afterward, I would feel like I could conquer the world, that was, until the next time it would happen.
The visits became so frequent that nurses gave me the same room each week and got to know my husband and I well.
I eventually became so ill that I had to have IV therapy at home with a visiting nurse.
I continued for as long as I could, into my second trimester, until finally, at an appointment with my doctor, I broke down crying, saying I couldn’t go on like this anymore.
My doctor then reached out to an endocrinologist at Michigan Medicine and asked about increasing my steroids to help control the disease, to which they replied, “Yes, of course she needs to increase her steroids. She isn’t getting enough with the pregnancy.”
After increasing my steroids, I immediately felt well again.
My son was born five weeks early with newborn jaundice but was otherwise healthy.
My next pregnancy, three and a half years later, thankfully, went much better.
Dealing with more adrenal crises
Everything had been going fine until 2014, the evening before New Year’s Eve.
I felt more tired than usual, like I was coming down with a cold. I took extra steroids and went to bed early so I could rest before work the next day.
But then, in the middle of the night, I woke up with a fever of 105. My husband called an ambulance.
I was so weak that the ambulance drivers had to bring a chair up to my bedroom, on the second floor, to bring me down the stairs to get me onto a stretcher.
Upon getting to the emergency room, doctors found that I was having an adrenal crisis triggered by the flu.
Then, the next evening, on New Year’s Eve, my nurse took my blood pressure and noticed I had crepitus in my left arm.
Several infectious disease doctors came in and told me I needed emergency surgery because they suspected I had necrotizing fasciitis. If an infection was found, amputation of my left arm would be required.
My family was devastated hearing this news, and all anxiously waited for me to come out of the operating room.
I remember waking up and looking down, realizing I had a bandage on my arm but that was all: no amputation.
Then things were fine until 2018.
One day, I was at work, looking at a computer screen, when I completely lost vision in my left eye. I couldn’t see anything at all.
I thought maybe I was getting a migraine.
I went to lie down, with the episode lasting several minutes. I took Tylenol and my symptoms began to improve.
I began to have instances of brain fog, vision loss and hyperpigmentation. I began wondering if something more harmful was happening to me.
I made an appointment with my endocrinologist and explained my symptoms. They ordered some bloodwork and found that my adrenocorticotropic hormone was significantly elevated.
She thought, perhaps, I wasn’t getting enough steroids and increased my dosage.
Despite trying this for several weeks, my symptoms didn’t improve.
My primary care doctor referred me to a neurologist as he suspected it could be migraines.
The neurologist ordered an MRI of my brain, even though she wasn’t convinced it would show anything.
The results came back and revealed that I did, in fact, have an enlargement on the right side of my pituitary gland, measuring 13mm.
This lesion was bulging into the suprasellar cistern and approaching the inferior surface of the right side of my optic nerve.
My endocrinologist then referred me to Michigan Medicine’s pituitary clinic.
There, the neurosurgeon said it was indeed a tumor, but they were unsure if it was secreting or non-secreting; if it was causing my symptoms, or if my symptoms were actually from my disease.
I made the decision to have the tumor removed in June of 2019, and after surgery, all my symptoms improved.
My headaches were better and mostly resolved, the brain fog was gone, along with the hyperpigmentation.
I felt like a new person.
Pathology later revealed that this was a secreting tumor (the one that the other neurosurgeon said would be extremely rare and very unlikely.)
Living a full life with Addison’s disease
I have had many hospitalizations and I am grateful for the people that have helped me through them.
I wouldn’t be where I am today without my family, friends, doctors, colleagues and the incredible scientists who have made treatments available to treat rare diseases like mine.
Since having this diagnosis from such a young age, I’ve learned that having a rare disease means constantly having to advocate for yourself – not being afraid to convince doctors that my symptoms were real and related to my condition, because I knew, and know, my symptoms, and my body, better than anyone else.
I’ve also had to educate others, like my family, friends and co-workers on what to do if I experience an adrenal crisis while with them.
The hope of sharing my story is to remind others with rare conditions that they’re not alone, and to also enlighten others that you never truly know what someone is dealing with everyday.
A wonderful physician once shared a saying with me: the disease may affect one person in a million, but if you are that one person, it has 100% chance of impacting you.
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This post was previously published on MICHIGANMEDICINE.ORG under a Creative Commons License.
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