Steve Schleuder: The Hidden Financial Burden of Living with Chronic Illness
Steve Schleuder, VP of Advocacy and Education at Next Generation of Cystinosis, shared a post on LinkedIn:
“I just finished reading an article from Hemophilia News Today that really resonated with me as an adult living with cystinosis.
One thing the article captures well is how deeply financial stress and chronic illness become interconnected.
Money stops being just about comfort or convenience and becomes tied to stability, access to healthcare, energy, safety, and the ability to exist without constantly bracing for the next crisis.
There are also many hidden costs associated with chronic illness that people often do not see: medications, appointments, insurance battles, transportation, lost work hours, disrupted schedules, mental exhaustion, and the ongoing unpredictability of managing health conditions long term.
Another important point the article emphasizes is that people do not always need lectures about budgeting harder, ‘staying positive,’ or simply becoming more resilient.
Often, what people actually need are accessible healthcare systems, flexible work opportunities, supportive communities, and enough financial breathing room to live with dignity.
Conversations around chronic illness and disability should include not only awareness, but also education, accessibility, sustainability, and opportunity.”
Stay updated with Hemostasis Today.
-
May 13, 2026, 13:09Ram Mohan Jaiswal։ Celebrating International Nurses Day with Voluntary Blood Donation
-
May 13, 2026, 13:05Mohammed VH: Altered INR and Bleeding Risk With Torsemide and Warfarin
-
May 13, 2026, 13:04Nadia Tarhini: Thromboembolic Complications in Pediatric Acute Lymphoblastic Leukemia
-
May 13, 2026, 12:44Tom Heck: Why Some Gene Therapies Succeed While Others Fail Commercially
-
May 13, 2026, 12:17Abdul Mannan: Optimizing Eltrombopag Response Through Proper Timing
-
May 13, 2026, 12:16Ajay Kumar Yadav: Empowering Healthcare Workers Through Hemophilia Education
-
May 13, 2026, 12:09Sophia Delicou: Modern Approaches to Transfusion Support During Pregnancy
-
May 13, 2026, 07:35Ifeanyichukwu Ifechidere: Why DIC is the Condition That Humbles even the Most Experienced Scientists
-
May 13, 2026, 07:26Genoveva Uzunova: Why It’s Time to Close the Sex Variable Gap in Healthcare