Annie, Woodinville, WA

Diagnosed with Polyglandular Autoimmune Syndrome.

annie

I knew little about autoimmune disease until 8 years ago. Surprisingly, I would soon be involved with patients much like me, all with unique stories; stories that can help spread awareness and connect us to make a bigger impact.

When I was in junior high I remember my Mom telling our family that she went to the doctor because of some trouble she was having with her lungs. She explained that she had been diagnosed with something called sarcoidosis, a disease involving abnormal collections of inflammatory cells that form as nodules in multiple organs, usually the lungs. Sarcoidosis was a word that when I finally could say it, I found really scary. We never learned it was an autoimmune condition. Our family pretty much continued on with life and my mom seemed to be un-impacted by her disease, or so we thought.

Sarcoidosis was a word that when I finally could say it, I found really scary. We never learned it was an autoimmune condition.

Flash forward; a few years ago I was feeling very sluggish and overwhelmingly fatigued. As a full-time working mother with three teenage daughters and a habit of taking on a lot, this just seemed part of my life and something I needed to “deal with”. I finally went to my primary care provider and discovered my thyroid levels were not only low but my immune system was making antibodies damaging the cells of my thyroid gland. My diagnosis was an autoimmune condition called Hashimoto’s Disease.

A year or so later, I went from having a pretty normal menstrual cycle to not having one for many months. A visit to the same primary care provider resulted in a second autoimmune diagnosis called Premature Ovarian Failure. This was not an easy time, as most female bodies are not meant to experience menopause at the age of 41 and certainly not overnight. Needless to say, my husband had to deal with a lot of mood issues during that time. Living with three teenage daughters and my issues caused me to hide his passport for a few years.

My journey is unfortunately typical for many who are living with one or many autoimmune conditions. Trying to get to the right specialist to help uncover what is truly going on in our complicated bodies can often take many years. My story is no exception.

Close to this time, I experienced a situation that finally pushed me to find and be treated by an endocrinologist, a specialist for the endocrine system. One afternoon I was talking to a friend on the phone and I started hallucinating, abruptly hung up the phone and felt like I was about to faint. My husband put me to bed and quickly called my twin sister to come help as he thought I was having a stroke. When my friend called back she said I was making no sense and that we needed to call 911. Following a long emergency session and a multitude of tests it was determined that the culprit was very low blood sugars. Apparently I had antibodies attacking my pancreas and I experienced a type 1 diabetes similarity for a short time. Finally it was learned that as a whole my endocrine organs have been, in some way, impacted by autoimmune disease. I was finally diagnosed years later with Polyglandular Autoimmune Syndrome.

My journey is unfortunately typical for many who are living with one or many autoimmune conditions. Trying to get to the right specialist to help uncover what is truly going on in our complicated bodies can often take many years. My story is no exception.

Autoimmune diseases often run in families. It will soon be 14 years since my mom passed away from complications stemming from sarcoidosis. My brother lives with alopecia areata, an autoimmune condition resulting in hair loss which is now I remission. My twin sister is impacted with autoimmunity. I have aunts and cousins with autoimmune conditions. Often times it is not just one family member who is afflicted, but many. I guess you could say our family “won the autoimmune lottery”, but I don’t really feel like autoimmunity is a game. For me this knowledge provides a mission and I am thankful to be able to work on improving patient policies that impact those living with autoimmune disease.

It was at this lunch meeting that she shared with me the list of 80+ different autoimmune diseases. My eyes stopped at sarcoidosis, and landed there for a time.

Four years ago I met Judi Rising of Pat’s Fund to share with her some policy work I was involved with at the time. It was at this lunch meeting that she shared with me the list of 80+ different autoimmune diseases. My eyes stopped at sarcoidosis, and landed there for a time. I could not stop thinking about my mom and all she went through during the last few years before her death. Dots began to connect for me and I realized that the many issues I was dealing with at that time were ALL autoimmune in nature and I was committed to help from that time. Judi shared with me her vision of what she wanted to accomplish and inspired me to do more. She and I created the Autoimmune Advocacy Alliance a few long months later and we continue this work with many fantastic organizations, physicians and patients.

I get inspiration every day from my amazing mother, Marilyn Kelly, and all of the courageous patients just like her. My hope is that my story and others might give those visiting the A3 website a reason to join in the work we are pursuing at A3. We all have stories behind our pictures. It is what we do with these stories to help make a difference that matters most to me.

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