Life with an autoimmune disease

Presented by: argenx

Shelley Gerson

Associate Director of U.S. Patient Advocacy

and silver

Meriel Parker

Myositis caregiver, rare disease advocate

Caregivers are the cornerstone of the autoimmune disease community. Their support, compassion and tenacity are essential for patients to seek the best possible quality of life. Meriel Parker, myositis caregiver and rare disease advocate, and Shelley Gerson, associate director of U.S. patient advocacy at argenx, discussed living with an autoimmune disease from a caregiver’s 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 had a shared experience and that we both had fathers who suffered from chronic illness and were caregivers,” Gerson told the audience.

She asked that the other caregivers in the room reveal themselves. Raised hands cut through the air, proving how common this role is in society.

According to the Journal of Neurology, “Sporadic inclusion body myositis (IBM) is the most common acquired myopathy in people over 50 years of age.” Delays at diagnosis are common in autoimmune diseases.

Parker explained how a family outing to a nature center led to his father receiving a life-changing diagnosis. “My father was a wonderful, strong man, an entrepreneur. No dream was too big for him,” she said.

His dreams included hiking. Parker and his daughter were joining him for a family hike to the same place he had taken Parker previously. The older man knew the terrain well. His slowing down was a surprise.

“He said, ‘My legs are so tired. I just can’t get up the hill,’ and the hill was only a fraction

of what I just put on that stage,” she said.

“It was just a little gradual incline,” she continued, pointing to the few steps she climbed to join Gerson on stage.

She knew it wasn’t just back pain.

“I didn’t say it out loud because I didn’t want him to worry, but I said we’re in trouble because nothing could hold my dad down, let alone a little sloping hill,” Parker continued. “This is how our journey began.”

It was a red tape-filled trip that Parker was uniquely prepared for.

“Having worked in healthcare, I discovered and saw that, for lack of a better term, it’s the squeaky wheel that gets the grease,” she said. “Older African Americans tend to have relatively higher rates of chronic disease than other racial/ethnic groups,” according to the Journal of Intercultural Gerontology. They need support.

His family cried out for his father.

An autoimmune disease is not like a severed limb or dislocated joint. It takes some detective work to identify it.

“We put him in touch with a surgeon, a back specialist to talk to, and we went

through a litany of nominations,” Parker continued. She described their approach to the process as “diligent.”

“We asked the right questions and requested referrals from specialists. »

It is important for caregivers to intervene, as patients may not be able to advocate for themselves due to the effects of their medical condition. “When a person doesn’t feel well, they try to live with their illness and their symptoms. It’s very difficult,” Parker said. “We went to all of his appointments together. Either my mom went with him or I went with him, and we worked as a team.”

Multigenerational living has allowed the family to work better together. “My father told me: If I want to fight this, if you really want me to be there with you and fight this, I have to live in the same house as you and my granddaughter because you are all my heir, and that

will give me the strength and joy to be able to live every day that I have,” Parker said.

They immediately began looking for accommodation. Living with his family helped Parker’s father overcome the challenges of illness and progress with the necessary support. “He moved to a cane, then a walker, then a wheelchair and a mobilized motorized wheelchair,” Parker said. Family was there to help him learn how to use each tool. “The four of us moved in together and worked as one unit.”

They dedicated their bodies to supporting his body, which is something caregivers do every day. “His physical strength has gone down, our physical strength has gone up,” Parker said.

THE Journal of Geriatric Nursing reports that “the taxing caregiving role often results in psychological and physiological stressors that negatively impact the caregiver’s personal health.” According to the Journal of Family Nursing“The support provided by family caregivers to patients with a chronic, life-limiting illness includes difficult, life-changing 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 need to take good care of yourself. I’ve learned first-hand the consequences of stress,” she said. “But we did what we had to do to keep him with us as long as possible.”

She devotes herself to her father’s needs to the exclusion of her own. “I didn’t want to have any regrets and so I was going to put every ounce of energy I could into living every moment with my father,” Parker said.

Depriving herself of the care she needed weakened a vital part of the team that cared for her father. She quickly found herself seeking treatment.

“I often went without sleep and started having muscle tremors on my own and started seeing a specialist for a diagnosis,” she said. During the evaluation, the doctor advised him to change his routine. They paid.

“I prioritized sleep, and maybe getting a massage once a month, going for a walk and taking some time for myself to take a break. It was necessary for me to be the best caregiver I could for my father,” she said.

She encouraged caregivers in the room to think about their physical and mental health before it starts to deteriorate.

“I learned my lesson the hard way.”