PARENTS AS RARE – EPISODE 062
Mary Morlino – Parenting with Sarcoidosis & Discussing the Global Genes 2022 RARE Patient Advocacy Summit
Mary Morlino is the Rare Concierge Patient Services Manager at Global Genes. Mary and I will be speaking on a Parenting While Rare panel at the upcoming 2022 RARE Patient Advocacy Summit. The summit is one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies. Visit the Global Genes website to get more information about attending in-person in San Diego or virtually, September 12th-14th.
EPISODE HIGHLIGHTS
Can you tell us about yourself and how rare disease has impacted you?
I work at Global Genes and I’m the Co-Founder of MarylandRARE, an organization that serves the rare disease community in the state of Maryland. I have two young adult daughters. When they were 7 and 9 years old, I was visiting my sister in California when I collapsed for an unknown reason. I spent a week in the hospital undergoing various testing and was released without any answers, only confirmation that something was wrong with my heart. I flew home and a day later I was hospitalized again, underwent additional testing and had a pacemaker put in. Several years later, my health started to decline rapidly and I had to wear an external defibrillator vest while I consulted with heart transplant doctors. A final test was a biopsy that revealed I had Sarcoidosis, an inflammatory disease where groups of cells create granulomas which inhibit blood flow and function.
What were the conversations like with your daughters about your diagnosis?
It was difficult because I was in the hospital, there was no hiding it, and my children were old enough to Google whatever they wanted about the disease. We had a series of conversations, giving them information and leaving the door open for future conversations or questions. Even as adults, we still talk, but they monitor me and concern themselves with how I’m doing and I wish they didn’t have to feel that way.
What advice do you have for navigating work, advocacy, parenting and disease?
I’ve had to shift to a less physical life and find a balance of personal growth and personal contribution to help me feel valued. This is why I got into advocacy- it fed me energy, allowed me to contribute and helped me to feel positive about my value in the world. I disregarded and eliminated anything in my life that didn’t need focus and energy. My best tips are to schedule rest, eat healthy, have compassion for your body and balance your priorities. If you can, find something valuable to you and focus on it.
LINKS & RESOURCES MENTIONED
Global Genes — https://globalgenes.org/
MarylandRARE— https://marylandrare.org/
2022 RARE Patient Advocacy Summit — https://globalgenes.org/event/rare-patient-advocacy-summit/
Foundation For Sarcoidosis Research — https://www.stopsarcoidosis.org/
EveryLife Foundation for Rare Diseases — https://everylifefoundation.org/
