Long Road to Rare

audrey_adamson_rare disease

Audrey Adamson's Story


Age: 37-45

A little bit about my journey:

My Diagnosis

Common Variable Immune Deficiency, Chronic Nephritis, Mixed Connective Tissue Disease, Endometriosis, Anxiety

Time to Get Diagnosed

My primary took 3 years after the worst of symptoms appeared. I got lucky; most people take up to 8 to be diagnosed with a Immune Deficiency

Year I was Diagnosed


Sending Love to

Henry Schroder

Hospital I'd Recommend

Univesity of Alabama Birmingham

This is my story:

I have had issues since I was a child. I was sick often. As I got older and went to the doctor by myself, I was called a liar. Nurses refused to believe I had a sinus infection once a month; that I had a respiratory infection every few months. Then one year I had an abscessed tooth. It burst. Though the dentist said I would be fine until my appointment, I wasn’t fine. The gunk from the infected tooth took over my immune system.
My boyfriend and I were supposed to see The Hangover 3 that weekend. But I felt bad and didn’t want to go. He knew it was serious if I was skipping a Bradley Cooper movie. The next morning I couldn’t feel my hands or my feet. At the ER, the doctors were amazed when I had no reflexes in my hands and legs. They did a lumbar puncture and then an MRI. They said I didn’t have MS and then threw me out of the hospital even though I did not want to be discharged. The next day I passed out and was back in the hospital. They kept me for three days and found nothing even after running neurological tests. I had trouble using my feet but since they physically worked, there was nothing they would do.
This mess went on for years. I never felt well, my arms and legs would go numb, some days I could barely walk. And no one in the medical field cared. I got a neurologist and a rheumatologist locally. They both found nothing and quickly wrote me off.
I got lucky then getting an appointment at University of Alabama Birmingham. I got to a rheumatologist who took me seriously. He had worked with an immunologist closely and sent me to him based on my symptoms and medical history. That immunologist was the first person to say they could help me. I did my vaccine tests but made a few antibodies and my Igg numbers weren’t low enough. I had to leave for six months and get sicker. In the meantime, they did genetic testing.
Six months later, the antibodies from the vaccine were mostly gone, my numbers were the same, but my DNA testing had come back and I had two of the three markers for hyperglobulinemia. I was finally diagnosed with an immune deficiency. It took close to three years to get a diagnosis and a treatment plan.
I started getting IVIG plasma infusions because my body didn’t make enough antibodies. Walking became easier because I wasn’t having an autoimmune reaction; what little white blood cells I had had been attacking my joints and we saw a better response in my kidney disease. My entire life changed. I was 90 percent who I used to be. And guess what? I am so excited! I won’t be 100 percent of what I used to be but now I can be 100 percent of what I am.
But my diagnosis is not who I am. It’s not my whole story. I love to read and write and go for walks with my cats. I work for nonprofits trying to make the world a better place. I love pop music and horror movies. My rare, invisible illness may dictate how I do somethings in my life but it does not stop me from being me. I am a person, not just a diagnosis.

Let’s play 20 questions:

The song that keeps me going is:
Hard Times by Paramore, Greatest by Sia
I never leave home without my:
lip balm, lotion and meds
My go-to feel better movie is: 
Someone Like You
If I was in the hospital, the celebrity I would most love to visit me would be:
Milia Jovovich or Jason Isaacs
When I need to relax, I:
read or soak in the tub
My favorite food is:
homemade mac and cheese
The quote that keeps me going is:
Those with the greatest capacity for good are also the ones with the greatest capacity for evil.
When I need a laugh, I:
watch the sitcom Titus
Meet my pets (or favorite stuffed animal):
I have a three year old, long haired cat named Iggy. God gave him beauty; not brains.
My hero is:
Christopher Reeve
When I’m having a down day I binge watch:
The Expanse
My favorite book to get lost in is:
Drowning Ruth
I want to be best friends with:
Eliza Dushku
The thing I’m most proud of:
I haven't given up trying to make the world a better place
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
I have learned to slow down. (that and I get to cut in line at Dragon Con. lol)
The most hilarious thing that has happened to me is:
As a kid I was in a house of glass maze and went running straight into a pane i didn't see. I bounced and then lay in the floor laughing and crying. Crying because it hurt and laughing because I was an idiot.
It really means a lot when someone does this:
Asks me how I am and means it.
My favorite social media account to follow is:
Serpent and Flame, Here Comes the Nerd, Grimoire Tea
The advice I would give to myself back at the beginning of this journey would be:
There will be an answer. You will feel better.
Words of encouragement that I’d give to my fellow warriors are
You are your best advocate. You know your body better than anyone else.
Follow my journey: https://spoononthewall.wordpress.com/

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