Rare Diseases Day changed My Life (APS-1)

Rare Diseases Day changed My Life (APS-1)

By Marilena, Autoimmune polyendocrine syndrome type 1, Canada, February 28, 2017

Marilena with her collage ‘I am here for you’

I was diagnosed with Autoimmune Polyendocrine Syndrome-Type 1 over fifty years ago and had not met anyone with this condition until two years ago. The condition mainly includes chronic mucocutaneous candidiasis, chronic hypoparathyroidism, and autoimmune adrenal insufficiency (Addison’s disease). In other words, it means a lot of doctor appointments, visits to the ER, hospitalizations, and daily medications: Nothing new to most of you.

In 2015, I decided to write about APS-1 for Rare Disease Day and came across the APS-Type 1 Foundation at www.apstype1.org . I read about a girl with APS-1 whose story was just like mine. I couldn’t believe it! Within three months, I met many others at the First International Symposium on APS-1 that just happened to take place in my home town, as well as a very caring and dedicated group of researchers from the National Institute of Health (USA) who are doing research on the condition. Hooray for researchers!

Meeting others with APS-1 changed how I viewed myself and my condition. It gave me the resources and the confidence I needed to make changes in my medical care and other aspects of my life as well. Reading your stories, I’m saddened by the pain and suffering many of you have had to go through but learning about your bravery and courage also gives me hope. Thank you for sharing. We are definitely not alone!

Originally shared on: https://www.rarediseaseday.org/stories/5916


  • Jackie Montalvo says:

    My son is Ismael lugo live in the Bronx ny.
    He is 29 years old and has asp-1. Love to no more about his condition.

  • Jackie Montalvo says:

    My son is 29 years of age asp-1. Like more information about his condition and the foundation.

  • Joe and Jackie Montalvo says:

    Our son is diagnosed with aps-1 as well. He is 29 years old, and has been diagnosed since 3 years old. I came across this during my research of the condition. Currently, he is in ICU, and we cannot find a solution to his current manifestations.

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