The story of Marilena
Rare Diseases and Getting Older (APS-Type 1)
Until I saw the survey in “Juggling Care and Daily Life: The Balancing Act of the Rare Disease Community” (www.eurordis.org), I hadn’t realized that aging is a blessing and a challenge for many rare patients. I was born with Autoimmune Polyendocrine Syndrome-Type 1 which primarily includes chronic mucocutaneous candidiasis, hypoparathyroidism, and adrenal insufficiency (Addison’s). During the past fifty plus years, I developed numerous other chronic conditions, many of them rare.
When I read the article, I was exhausted and overwhelmed in my role as patient, caregiver and advocate. I was attending several medical appointments a week and trying to meet my extensive daily needs with minimal help. The survey provided me with validation and a new frame of reference. Learning about others’ experiences made me more compassionate towards myself and more appreciative of my exceptional healthcare team. As a result, I am now making changes with renewed strength, courage and hope.