ONCE UPON A GENE - EPISODE 048 - What is Chronically Surviving with Marcelle Longlade
Marcelle Longlade is living with multiple rare diseases. Her platform, Chronically Surviving connects community, offers accessible yoga and other healing practices and services.
EPISODE HIGHLIGHTS
Can you tell me how you became involved with Our Odyssey?
I got connected with them before COVID hit, looking for ways to connect with others in the chronic and rare disease community, especially young adults. It was through a NORD newsletter that I found out about Our Odyssey's virtual meetups and checked it out. I've been a regular ever since and tried to get as involved as I can.
Had you been part of an advocacy or support group prior?
I have been trying to breach the advocacy world. I've been a medical advocate for most of my life because my mom has a similar debilitating disorder and I've been a caregiver for a big part of my life. For the last three years, I've worked on my brand, Chronically Surviving. It's similar to Our Odyssey in that it's a collective network of peer support. I've been in chronic pain groups, but it's not for young adults specifically. Connecting with Our Odyssey has renewed my passion to raise awareness and advocate for young adults.
Can you tell us about the rare diseases you're living with?
My first major diagnosis was Familial Mediterranean Fever (FMF) which is a rare genetic and auto-inflammatory disorder. It's systemic and affects every part of my body. With FMF comes Cold Urticaria, which is an anaphylactic allergy to the cold. I also have a connective tissue disorder, diagnosed right now as Hypermobile EDS, but I'm doing more genetic testing now. I also have narcolepsy with cataplexy, a rare neurological disorder that causes me to be incredibly fatigued and I fall asleep without notice. This is generally triggered by emotional occurrences and any extreme emotion. I have Postural orthostatic tachycardia syndrome (POTS), PTSD, anxiety and social anxiety.
What affects you the most daily?
I have a lot of symptoms, but the most debilitating are pain in my joints, neurological pain, migraines, fatigue and a lot of nausea.
Tell me about the shift from your biomedical engineer job.
It was rough. I remember that it was around Valentine's Day and I was already out of vacation and sick days. It was very corporate, I worked 70 hour weeks and it was high stress and intense. My employer wasn't accommodating at all, wouldn't allow me to work from home and so I went on short term disability. I didn't have a diagnosis at first and I was scared that I would be forced to quit my job or go back to my job. I got the FMF diagnosis in time for my long term disability application and I had to rebuild my life. I started to do yoga and it has been the best thing in my life- the gateway to the community I have around me now. It was a blessing that I got out of the rat race, that I'm not working crazy hours and that I'm an entrepreneur like I always wanted to be.
When you started yoga, did you know right away that you wanted to tailor your practice to the rare disease and disability community?
I originally thought I was alone, so I planned to teach to the geriatric population. Then I started connecting with young adults in the rare disease community and realized I wasn't alone. From there, I realized the void in the yoga and meditation community for professionals who delivered classes in a safe and engaging manner for people with varied chronic physical or mental conditions.
What are you most excited about for the future?
Connecting with people, especially since I've connected with Our Odyssey. Every meetup gives me so much fulfillment being surrounded by the community.
LINKS AND RESOURCES MENTIONED
EPISODE 036 - Anna Laurent on Alagille Syndrome and Her Road to Advocacy
TUNE INTO THE ONCE UPON A GENE PODCAST
CONNECT WITH EFFIE PARKS