Presented By: argenx
Shelley Gerson
Associate Director of US Patient Advocacy
at argenx
Meriel Parker
Myositis Caregiver, Rare Disease Advocate
Caregivers are the cornerstone of the autoimmune illness community. Their support, compassion, and tenacity are essential to patients pursuing the best quality of life possible. Meriel Parker, a Myositis Caregiver and Rare Disease Advocate, and Shelley Gerson, Associate Director of US Patient Advocacy at argenx, discussed life with an autoimmune condition from a caregiver perspective at the Black Health Matters 2025 Health Summit & Expo Recap.
The two bonded over their mutual experience as caregivers.
“Meriel and I discovered that we have a common experience, and that we both had dads that had chronic illness, and were caregivers,” Gerson told the audience.
She requested that other caregivers in the room reveal themselves. Raised hands sliced through the air, proving how common the role is in society.
According to the Journal of Neurology, “Sporadic inclusion body myositis (IBM) is the most common acquired myopathy in individuals older than 50 years.” Delays to diagnosis are frequent with autoimmune conditions.
Parker explained how a family outing to a nature center led her father to receive a life-changing diagnosis. “My dad was a formidable, strong man, an entrepreneur. No dream was too big for him,” she said.
His dreams included hiking. Parker and her daughter were joining him on a family hike to the same location he had taken Parker to previously. The older man was familiar with the terrain. His slowing down was a surprise.
“He said, ‘My legs are so tired. I just can’t make it up the hill,’ and the hill was a fraction
of what I’ve just stepped up on this stage,” she said.
“It was just a little gradual slope,” she continued, gesturing to the few steps she walked up to join Gerson on stage.
She knew this was no simple backache.
“I didn’t say it out loud because I didn’t want him to be concerned, but I said, we’re in trouble because nothing would grip my father, let alone a small sloping hill,” Parker continued. “That began our journey.”
It was a journey full of red tape that Parker was uniquely prepared for.
“Having worked in healthcare, I have found, and I’ve seen that, for lack of a better term, the squeaky wheel gets the grease,” she said. “Older African Americans tend to have relatively higher rates of chronic illness than other race/ethnic groups,” according to the Journal of Cross-Cultural Gerontology. They require support.
Her family squeaked on her father’s behalf.
An autoimmune disease is not like a severed limb or a dislocated joint. It requires detective work to identify.
“We got him set up with a surgeon, a back specialist to talk with, and went
through a litany of appointments,” Parker continued. She described their approach to the process as “diligent.”
“We asked the right questions, and we prompted for referrals to specialists.”
It is important caregivers step in, because patients might be unable to advocate for themselves due to the effects of their conditions. “When a person is not feeling well, they are trying to manage just living with the condition and the symptoms. It’s very challenging,” said Parker. “We would go to all of his appointments together. Either my mom went with him, or I did, and we would work as a team.”
Multi-generational living helped the family work together even better. “My father said to me, If I’m going to fight this, if you really want me to be there with you and to fight this, I need to live in the same house as you and my granddaughter because you all are my heir, and that
will give me the strength and the joy to be able to live through whatever days I have,’” said Parker.
They started house hunting immediately. Living with family helped Parker’s father navigate the challenges of the disease, progressing with necessary support. “He went to a cane, and then a rollator, and then to a wheelchair, and a mobilized motorized wheelchair,” said Parker. Family was there to help him learn to use each tool. “The four of us moved in together, and we worked as a unit.”
They dedicated their bodies to support his body, something caregivers do daily. “His physical strength declined, our physical strength increased,” said Parker.
The Journal of Geriatric Nursing reports that “The taxing caregiving role often results in psychological and physiological stressors that negatively impact the personal health of the caregiver.” According to the Journal of Family Nursing, “Family caregivers’ support of patients with chronic, life-limiting illness includes difficult, life-altering, and often long-term tasks.”
Parker confirmed that caregiving requires immense pressure.
“It’s not unimportant for us to focus on the fact that if you’re a caregiver, you have to take good care of yourself. I learned firsthand of the toll that the stress takes on you,” she said. “But we did what we had to do to keep him with us as long as we could.”
She devoted herself to her father’s needs to the exclusion of her own. “I did not want to have any regrets, and so I was going to pour in every ounce of energy that I could into having every moment with my father,” said Parker.
Denying herself the care she needed weakened a core element of the team caring for her father. She found herself seeking treatment soon.
“I went without sleep a lot, and I started to have muscle tremors on my own and had started to go to a specialist for diagnosis,” she said. During the assessment, the doctor advised her to make changes in her routine. They paid off.
“I prioritized sleep, and maybe getting a massage once a month, and taking a walk, and taking some time for myself to actually have a break. It was necessary for me to be the best caregiver that I could be for my father,” she said.
She encouraged the caregivers in the room to consider their physical and mental health before they start deteriorating.
“I learned the lesson the hard way.”
