Hello, Adversity: Introducing Chris Anselmo
Chris Anselmo, autor de «Hello, Adversity», es un nuevo colaborador de Know Rare.
By Laura Will
There is a lesson embedded in the name of Chris Anselmo’s website: “Hello, Adversity.” He is encouraging us to turn towards our adversity and greet it head-on. This simple, courageous act illuminates a route through the turmoil and towards acceptance, connection, and comfort, even amid the uncertainties of a fast-progressing diagnosis.
“It’s not the case that people just handle adversity perfectly…anybody who tells you that they're not dealing with adversity or that they've conquered it, I've come to learn, is lying or deluded.”
Chris describes himself as having lived “two distinct lives”: the first, enjoyed within a somewhat typical childhood; and the second, sculpted within the challenges of an adult-onset degenerative muscle disease called limb-girdle muscular dystrophy type 2B.
Chris’s rare disease diagnostic journey is quite unique. During his senior year of high school, he was in a car accident that sent him to the hospital. When the emergency room clinicians discovered extremely elevated levels of creatine kinase (a blood enzyme that indicates muscle injury), they were worried that he had sustained a potentially life-threatening internal injury. But he remained stable, and other tests came back normal. No longer acutely concerned, Chris was discharged but began a diagnostic journey. About a year later, he received his rare muscular dystrophy diagnosis. He had yet to experience any symptoms, and he was young and athletic, so he headed off to college without giving the disease a second thought.
Four years later, as his college graduation approached, Chris started to notice his legs burning at the end of his regular running sessions. He reconnected with a neurologist who confirmed the earlier diagnosis, and, for the first time, Chris was made aware of the terrifying timeline of his disease. He’d be in a wheelchair in five to ten years.
Upon hearing the news, Chris admits, he made “every mistake in the book in terms of how to handle it.” Shocked, he shut others out, envied his peers, and could only see the opportunities lost to him. In terms of coping strategies, Chris says he became a “crash test dummy.” I, for one, am grateful for his willingness to test, crash, test again, and tell us the tales.
“I had to figure out how to reverse-engineer the goals I had prior to diagnosis, knowing the level of strength that I now lived with. I had to force myself to find the path. And in doing that, I realized there was still a lot I could do.”
Six years after symptom onset, Chris decided to go to business school. As his arms lost the strength to carry his backpack, he was forced to start looking to those around him for help. As he found himself using a wheelchair more and more, Chris began grappling with the frustration, grief, comparisons, and fears he had avoided dealing with up to that point. As he faced the ups and downs of life and said “hello” to his adversity, Chris’s everyday lived experience shifted in empowering ways.
“I’d like things to be stable and predictable, but that’s not going to happen. I’ve learned how to deal with change, how to adapt to circumstances, and how to be comfortable with uncertainty. I don’t do it perfectly, but I’ve also learned to give myself some slack.”
He has become a master of gleaning wisdom from his lived experiences. Chris guides his readers through the tough stuff of life—both the monumental milestones and the daily grind. Without coming across as preachy or jaded, Chris provides wisdom for a wide audience in a balanced way, weaving in uplifting truths without downplaying the challenges.
Know Rare is thrilled to be partnering with Chris Anselmo, author of “Hello, Adversity,” as he becomes a regular contributor to our platform.
Read More Stories From Chris Anselmo:
Latest from Know Rare
In children, ITP is more often diagnosed during the fall and winter. This pattern suggests that infections or environmental factors, such as viruses or some vaccines, may trigger the immune system to attack platelets. Researchers wondered if the time of year also affected when adults develop ITP.
From prenatal uncertainty and postpartum anxiety to therapy, grief, and hope, a mother shares her experience raising a child with a rare disease, navigating the healthcare system, finding community, and learning to embrace a different—but deeply meaningful—path as a parent.
A Danon disease study, led by researcher Dr. Barry Greenberg and published in the New England Journal of Medicine, wins an award! The study focuses on gene therapy as a potential treatment option for Danon disease. The study showed early signs that gene therapy may help the hearts of people with Danon disease.
A poster, presented at the European Hematology Association meeting in June, described a study that looked at tiredness (fatigue) in adults with immune thrombocytopenia (ITP). Researchers wanted to see if fatigue was related to bleeding or other health test results.
Lucky Shanmugan was recently featured in Porter Ranch Living, his local magazine, for Father’s Day: in his interview, Lucky talks about Osteogenesis Imperfecta, a rare genetic or heritable disorder of the connective tissue, and the incredible journey towards his official diagnosis.
Here are 9 things Chris Anselmo wishes someone had told him after his rare disease diagnosis.
Las dificultades y la fortaleza de una familia a la hora de buscar respuestas y obtener un diagnóstico para su hijo, tras numerosas pruebas, biopsias cerebrales y hospitalizaciones. Y el alivio, pero también el dolor, al poder finalmente ponerle nombre a la enfermedad rara que afecta a su hijo: el trastorno relacionado con el gen BCL11B.
La Fundación Danon apoya decididamente a las personas que padecen la enfermedad de Danon, proporcionándoles información fiable, recursos y apoyo para ayudarles a afrontar la vida, desde el diagnóstico hasta el tratamiento.
For many families, caregiving for a child with a rare or medically complex condition is a full-time job. The problem is, it’s a job with no training, no time off, and no clear job description. If you’re looking for the light at the end of the tunnel, you don’t have to search alone. Check out some of Paige’s favorite resources.
For most of celiacs, despite months on a strict GF diet, energy stays low and blood work reveals nutrient deficiencies. The lesson? A "gluten-free" label isn't a health guarantee—just a guarantee you'll pay more.
Si te han dicho que padeces NMOSD seronegativa, hay casi un 50 % de probabilidades de que sea otro anticuerpo el que provoque tus síntomas: el anticuerpo MOG.
Therapy Near Me es un servicio de salud mental de ámbito nacional con sede en Australia que facilita el acceso a psicólogos, terapeutas, especialistas en apoyo conductual y trabajadores sociales.
En la edición anual de la «Kidney Week» de la Sociedad Americana de Nefrólogos (ASN), la mayor organización mundial de profesionales sanitarios especializados en nefrología, se presentaron los últimos avances en investigación. Se han invertido más de 35 millones de dólares en investigación con la ASN, y hay numerosos tratamientos en fase de desarrollo para la nefropatía por IgA (IgAN), con investigadores que estudian activamente más de 20 fármacos diferentes.
Cuando me diagnosticaron la enfermedad celíaca, pensé que bastaría con evitar el pan y la pasta. Pronto me di cuenta de que llevar una vida verdaderamente sin gluten es mucho más complicado, y comparto mi experiencia para ayudar a las personas recién diagnosticadas a comprender lo que les espera.
La retinopatía es un problema ocular que padecen muchas personas con la enfermedad de Danon. Puede provocar manchas oscuras en la parte exterior del ojo, visión borrosa o empeoramiento de la visión, y resultados anormales en un examen oftalmológico. A veces, estos cambios oculares aparecen antes que los problemas cardíacos, por lo que un examen oftalmológico puede ayudar a detectar la enfermedad en una fase temprana.
A heartfelt story about a mother who found purpose and strength among the tragedy of losing a child diagnosed with an ultra rare genetic disorder.
Kaya Girl Legacy, Inc. es una organización sin ánimo de lucro con sede en Florida, fundada en memoria de Kaya Humbert, una preciosa niña que nació con el síndrome de insuficiencia de esfingosina fosfato liasa (SPLIS), uno de los 46 casos conocidos en todo el mundo. La fundación se dedica a empoderar a las familias proporcionándoles información sobre su salud genética, así como a promover el acceso temprano a las pruebas genéticas y la sensibilización sobre las enfermedades raras.
Un poema en prosa de Jim Kuhn, un valiente luchador que vive con sarcoidosis, una enfermedad inflamatoria poco común.
Laura, de Rare Mom, nos cuenta cómo los preparativos de su familia para Halloween se convirtieron en una explosión de amor y creatividad familiar, ya que todos colaboraron en el diseño y la confección de un disfraz para Alden, su hijo con una enfermedad compleja.
En lugar de partir de un compuesto farmacológico recién descubierto, la investigación orientada al paciente (PCOR) es un tipo de investigación que comienza por dirigirse a los pacientes y a sus cuidadores y preguntarles: «¿Qué es lo que más les importa?», «¿Qué preguntas quieren que se respondan?», «¿Qué síntomas desearían que se controlaran mejor?» y «¿Qué les quita el sueño?».
Four years ago, Michael Grivas’ life suddenly changed when he learned that he had Brugada Syndrome, a genetic disorder in which the electrical activity of the heart is abnormal due to channelopathy. Learn more about his story.
Fatigue is a very common and often debilitating symptom of IgAN. It is linked to disease progression and reduced kidney function, but other factors like inflammation, anemia, and mental health also play a role. In a 2025 study, the majority of patients with IgAN reported fatigue, and patients with more severe proteinuria and lower kidney filtration rates (eGFR) experienced worse fatigue.
¿Por qué nos cuesta tanto aceptar ayuda? A menudo, las personas asociamos la ayuda con la debilidad y la pérdida de independencia y control. Sin embargo, si cambiamos nuestra forma de pensar, aceptar ayuda puede considerarse una forma de empoderamiento: mostrar vulnerabilidad y confiar en alguien para que nos ayude requiere una gran fortaleza.
Tener una enfermedad rara supone una carga mental enorme. Rare Human Lindsay cuenta que hay cosas que ya no le importan, mientras se ocupa de los síntomas de su enfermedad rara, de los especialistas y de los ensayos clínicos.
Lindsay, de Rare Human, comparte sus «aspectos positivos». No se trata de que «lo que no te mata te hace más fuerte», sino de que lo que no te mata te hace más valiente. Nos cuenta que ha establecido vínculos más profundos con los demás, ha mejorado su capacidad para pedir y aceptar ayuda, y ya no le da tanto miedo la palabra «no».
La periodista y defensora de las enfermedades raras Lindsay Guentzel explica por qué los ensayos clínicos son un salvavidas para la comunidad de personas afectadas por enfermedades raras. Dado que solo el 5 % de las enfermedades raras conocidas cuenta con un tratamiento aprobado por la FDA, los ensayos suelen ser la única vía hacia el tratamiento, el progreso y la esperanza.
Lindsay was diagnosed with dermatomyositis a couple of years ago. Since then, she has undergone more than 350 doctor appointments, 250+ hours of infusions, 10+ ER visits, while juggling insurance approvals, rides, and her pain and fatigue.
Laura Will
Laura is a mother, wife, friend, sister, and nurse. When part of her identity became the mother of a child with a life-limiting medical condition, poetry became a powerful outlet. Follow her journey at her website, www.adragonmomswords.com, or on her instagram Instagram @lauramonroewill #aldenanthonysmiles