{"id":65281,"date":"2025-12-22T20:02:47","date_gmt":"2025-12-23T01:02:47","guid":{"rendered":"https:\/\/blackhealthmatters.com\/?p=65281"},"modified":"2025-12-30T20:09:11","modified_gmt":"2025-12-31T01:09:11","slug":"life-with-an-autoimmune-condition","status":"publish","type":"post","link":"https:\/\/blackhealthmatters.com\/life-with-an-autoimmune-condition\/","title":{"rendered":"Life With An Autoimmune Condition"},"content":{"rendered":"<p style=\"text-align: center;\"><strong>Presented By:\u00a0argenx\u00a0<\/strong><\/p>\n<p style=\"text-align: center;\"><span data-contrast=\"auto\">Shelley Gerson<\/span><span data-ccp-props=\"{&quot;335551550&quot;:2,&quot;335551620&quot;:2}\">\u00a0<\/span><\/p>\n<p style=\"text-align: center;\"><em>Associate Director of\u00a0US Patient Advocacy\u00a0\u00a0<\/em><\/p>\n<p style=\"text-align: center;\"><span data-contrast=\"auto\">at\u00a0argenx<\/span><span data-ccp-props=\"{&quot;335551550&quot;:2,&quot;335551620&quot;:2}\">\u00a0<\/span><\/p>\n<p style=\"text-align: center;\"><span data-contrast=\"auto\">Meriel Parker<\/span><span data-ccp-props=\"{&quot;335551550&quot;:2,&quot;335551620&quot;:2}\">\u00a0<\/span><\/p>\n<p style=\"text-align: center;\"><em>Myositis Caregiver,\u00a0Rare Disease Advocate\u00a0\u00a0<\/em><\/p>\n<p><span data-contrast=\"auto\">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\u00a0argenx, discussed life with an autoimmune condition from a caregiver perspective at the Black Health Matters 2025 Health Summit &amp; Expo Recap.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<h3><span data-contrast=\"auto\">The two bonded over their mutual experience as caregivers.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/h3>\n<p><span data-contrast=\"auto\">\u201cMeriel and I discovered that we have a common experience, and that we both had dads that had chronic illness, and were caregivers,\u201d Gerson told the audience.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">She\u00a0requested\u00a0that other caregivers in the room reveal themselves. Raised hands sliced through the air, proving how common the role is in society.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">According to the Journal of\u00a0<\/span><a href=https://blackhealthmatters.com/"https:////pubmed.ncbi.nlm.nih.gov//36690456///"><span data-contrast=\"none\">Neurology,<\/span><\/a><span data-contrast=\"auto\">\u00a0\u201cSporadic inclusion body myositis (IBM) is the most common\u00a0acquired\u00a0myopathy in individuals older than 50 years.\u201d\u00a0<\/span><a href=https://blackhealthmatters.com/"https:////pmc.ncbi.nlm.nih.gov//articles//PMC9677896///"><span data-contrast=\"none\">Delays\u00a0<\/span><\/a><span data-contrast=\"auto\">to diagnosis\u00a0are\u00a0frequent with autoimmune conditions.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Parker explained how a family outing to a nature center led her father to receive a life-changing diagnosis. \u201cMy dad was a formidable, strong man, an entrepreneur. No dream was too big for him,\u201d she said.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">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.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">\u201cHe said, \u2018My legs are so tired. I just\u00a0can&#8217;t\u00a0make it up the hill,\u2019 and the hill was a fraction<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><span data-contrast=\"auto\">of what\u00a0I&#8217;ve\u00a0just stepped up on this stage,\u201d she said.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">\u201cIt was just a little gradual slope,\u201d she continued,\u00a0gesturing to\u00a0the few steps she walked up to join Gerson on stage.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<h3><span data-contrast=\"auto\">She knew this was no simple backache.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/h3>\n<p><span data-contrast=\"auto\">\u201cI didn&#8217;t say it out loud because I didn&#8217;t want him to be concerned, but I said, we&#8217;re in trouble because nothing would grip my father, let alone a small sloping hill,\u201d Parker continued. \u201cThat began our journey.\u201d\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">It was a journey full of red tape that Parker was uniquely prepared for.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">\u201cHaving worked in healthcare, I have found, and I&#8217;ve seen that, for lack of a better term, the squeaky wheel gets the grease,\u201d she said. \u201cOlder African Americans tend to have relatively higher rates of chronic illness than other race\/ethnic groups,\u201d according to the\u00a0<\/span><a href=https://blackhealthmatters.com/"https:////pmc.ncbi.nlm.nih.gov//articles//PMC2929526///"><span data-contrast=\"none\">Journal of Cross-Cultural Gerontology<\/span><\/a><span data-contrast=\"auto\">. They\u00a0require\u00a0support.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Her family spoke on her father\u2019s behalf. <\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">An autoimmune disease is not like a severed limb or a dislocated joint. It requires detective work to\u00a0identify.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">\u201cWe got him set up with a surgeon, a back specialist to talk with, and went<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">through a litany of appointments,\u201d Parker continued. She described their approach to the process as \u201cdiligent.\u201d\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">\u201cWe asked the right questions, and we prompted for referrals to specialists.\u201d\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">It is important\u00a0caregivers\u00a0step\u00a0in, because patients might be unable to advocate for themselves\u00a0due to the effects\u00a0of their conditions. \u201cWhen a person is not feeling well, they are trying to manage just living with the condition and the symptoms.\u00a0It&#8217;s\u00a0very challenging,\u201d said Parker. \u201cWe would go to\u00a0all of\u00a0his appointments together. Either my mom went with him, or I did, and we would work as a team.\u201d\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Multi-generational living helped the family work together even better. \u201cMy father said to me, If I&#8217;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<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><span data-contrast=\"auto\">will give me the strength and the joy to be able to live through whatever days I\u00a0have,\u2019\u201d\u00a0said Parker.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">They started house hunting\u00a0immediately. Living with family helped Parker\u2019s father navigate the challenges of the disease, progressing with necessary support. \u201cHe went to a cane, and then a rollator, and then to a wheelchair, and a mobilized motorized wheelchair,\u201d said Parker. Family was there to help him learn to use each tool. \u201cThe four of us moved in together, and we worked as a unit.\u201d\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">They dedicated their bodies to support\u00a0his\u00a0body, something caregivers do daily. \u201cHis physical strength\u00a0declined,\u00a0our physical strength increased,\u201d said Parker.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">The\u00a0<\/span><a href=https://blackhealthmatters.com/"https:////www.sciencedirect.com//science//article//abs//pii//S019745722030313X/"><span data-contrast=\"none\">Journal of Geriatric Nursing<\/span><\/a><span data-contrast=\"auto\">\u00a0reports that \u201cThe taxing caregiving role often results in psychological and physiological stressors that negatively impact the personal health of the caregiver.\u201d According to the\u00a0<\/span><a href=https://blackhealthmatters.com/"https:////pmc.ncbi.nlm.nih.gov//articles//PMC8114560///"><span data-contrast=\"none\">Journal of Family Nursing<\/span><\/a><span data-contrast=\"auto\">, \u201cFamily caregivers\u2019 support of patients with chronic, life-limiting illness includes difficult, life-altering, and often long-term tasks.\u201d<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<h3><span data-contrast=\"auto\">Parker confirmed that caregiving requires immense pressure.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/h3>\n<p><span data-contrast=\"auto\">\u201cIt&#8217;s\u00a0not unimportant\u00a0for us to focus on the fact that if\u00a0you&#8217;re\u00a0a caregiver, you\u00a0have to\u00a0take\u00a0good care\u00a0of yourself. I learned firsthand of the toll that the stress takes on you,\u201d she said. \u201cBut we did what we had to do to keep him with us as long as we could.\u201d\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">She devoted herself to her father\u2019s needs to the exclusion of her own. \u201cI 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,\u201d said Parker.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Denying herself the care she needed weakened a core element of the team caring for her father. She found herself seeking treatment\u00a0soon.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">\u201cI 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,\u201d she said. During the assessment, the doctor\u00a0advised her to\u00a0make changes\u00a0in\u00a0her routine. They paid off.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">\u201cI prioritized sleep, and\u00a0maybe getting\u00a0a massage once a month, and taking a walk, and taking some time for myself to\u00a0actually have\u00a0a break. It was necessary for me to be the best caregiver that I could be for my father,\u201d she said.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<h3><span data-contrast=\"auto\">She encouraged the caregivers in the room to consider their physical and mental health before they\u00a0start\u00a0deteriorating.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/h3>\n<p><span data-contrast=\"auto\">\u201cI learned the lesson the hard way.\u201d\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Presented By:\u00a0argenx\u00a0 Shelley Gerson\u00a0 Associate Director of\u00a0US Patient Advocacy\u00a0\u00a0 at\u00a0argenx\u00a0 Meriel Parker\u00a0 Myositis Caregiver,\u00a0Rare Disease Advocate\u00a0\u00a0 Caregivers are the cornerstone of the autoimmune illness community. Their support, compassion, and tenacity [&hellip;]<\/p>\n","protected":false},"author":21,"featured_media":65282,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"video","meta":{"footnotes":""},"categories":[6567],"tags":[6801,6802,3163,6739,6635],"class_list":["post-65281","post","type-post","status-publish","format-video","has-post-thumbnail","category-autoimmune-disease","tag-autoimmune","tag-autoimmune-condition","tag-autoimmune-disease","tag-main-video","tag-noads","post_format-post-format-video"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v26.9 (Yoast SEO v26.9) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Life With An Autoimmune Condition - Black Health Matters<\/title>\n
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