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Monthly Archives: May 2025

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Navigating a New Life with “The Trifecta” – POTS/MCAS/EDS

Navigating a New Life with “The Trifecta” – POTS/MCAS/EDS

  • Post author:Patient Worthy Contributor
  • Post published:May 20, 2025
  • Post category:Dysautonomia

My name is Sarah. I am a solo mother to a beautiful five-year-old named Ensley! I’m not quite sure where to begin, but my world abruptly changed post-COVID-infection: January 7th…

Continue Reading Navigating a New Life with “The Trifecta” – POTS/MCAS/EDS
An Eleven-Year-Old Girl in Rowlett, Texas is Slated to Make Medical History

An Eleven-Year-Old Girl in Rowlett, Texas is Slated to Make Medical History

  • Post author:Rose Duesterwald
  • Post published:May 19, 2025
  • Post category:Rare Disease

In 2023, Marley Mansour of Rowlett, Texas and her family were told that Marley had an extremely rare genetic condition called NARS1 disorder. Now, Marley is the world’s first person…

Continue Reading An Eleven-Year-Old Girl in Rowlett, Texas is Slated to Make Medical History
Can Semaglutide Halt or Even Reverse Fatty Liver Disease?

Can Semaglutide Halt or Even Reverse Fatty Liver Disease?

  • Post author:Rose Duesterwald
  • Post published:May 16, 2025
  • Post category:Metabolic dysfunction-associated steatohepatitis

The results released from the Phase III ESSENCE clinical trial, and recently published by Medical Xpress and in the NEJM, found that the drug semaglutide is effective in the treatment…

Continue Reading Can Semaglutide Halt or Even Reverse Fatty Liver Disease?
A Surprise Diagnosis: Raiden’s Journey with Charcot-Marie-Tooth Disease and Kidney Disease

A Surprise Diagnosis: Raiden’s Journey with Charcot-Marie-Tooth Disease and Kidney Disease

  • Post author:Rose Duesterwald
  • Post published:May 16, 2025
  • Post category:Charcot-Marie-Tooth disease

Raiden Messerli and his family thought that he had an ordinary case of the flu. Brandi Lewis, Raiden's mother, discussed in an interview with KCCI8 News how she still vividly…

Continue Reading A Surprise Diagnosis: Raiden’s Journey with Charcot-Marie-Tooth Disease and Kidney Disease
Meet Gabby: The Shield-maiden With the Sweetest Hugs

Meet Gabby: The Shield-maiden With the Sweetest Hugs

  • Post author:PW Collaborator
  • Post published:May 15, 2025
  • Post category:Pediatric Low-grade Glioma

Acknowledgment: This patient story is sponsored by Day One Biopharmaceuticals and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing…

Continue Reading Meet Gabby: The Shield-maiden With the Sweetest Hugs
When They Were Told His Leukemia Had Spread, They Planned a Wedding to Celebrate His Life – PART 2

When They Were Told His Leukemia Had Spread, They Planned a Wedding to Celebrate His Life – PART 2

  • Post author:Rose Duesterwald
  • Post published:May 15, 2025
  • Post category:Myelodysplastic syndromes

This article is a continuation of a previous story, and is an excerpt from original author Isabella Cristobal's post. To read the first part of the article, please click here.…

Continue Reading When They Were Told His Leukemia Had Spread, They Planned a Wedding to Celebrate His Life – PART 2
A New Hope for Recurrent Pericarditis Patients: Exploring a Potential Non-Immunosuppressive Option

A New Hope for Recurrent Pericarditis Patients: Exploring a Potential Non-Immunosuppressive Option

  • Post author:Patient Worthy Contributor
  • Post published:May 13, 2025
  • Post category:Pericarditis

Pericarditis is a condition in which the sac that surrounds and protects the heart becomes inflamed. It is most frequently caused by a viral infection and often impacts people in…

Continue Reading A New Hope for Recurrent Pericarditis Patients: Exploring a Potential Non-Immunosuppressive Option
Scientists Confirm a 1958 Theory That Has Been Continually Discarded as Impossible

Scientists Confirm a 1958 Theory That Has Been Continually Discarded as Impossible

  • Post author:Rose Duesterwald
  • Post published:May 12, 2025
  • Post category:Rare Disease

Professor Ronald Breslow was a chemist at Columbia University who, in 1958, proposed the theory that vitamin B1 (thiamine) could regulate metabolism pathways in the body by stabilizing a reactive…

Continue Reading Scientists Confirm a 1958 Theory That Has Been Continually Discarded as Impossible
How Laura Got Her Life Back: The Impact of Organ Donation

How Laura Got Her Life Back: The Impact of Organ Donation

  • Post author:Patient Worthy Contributor
  • Post published:May 9, 2025
  • Post category:Rare Disease

Let’s start at the beginning of my long journey. My name is Laura, and around fifteen years ago, I was diagnosed with type-2 diabetes and prescribed medication to control it.…

Continue Reading How Laura Got Her Life Back: The Impact of Organ Donation
Never Give Up: Closing in on Alzheimer’s Disease

Never Give Up: Closing in on Alzheimer’s Disease

  • Post author:Rose Duesterwald
  • Post published:May 8, 2025
  • Post category:Alzheimer's disease

Immune dysfunction and inflammation have been found to play significant roles in Alzheimer's disease. An analysis of brain tissue in an animal model reveals a potential for immune system dysfunction at…

Continue Reading Never Give Up: Closing in on Alzheimer’s Disease
Lessons Learned as a 3rd-Generation Fabry Disease Patient

Lessons Learned as a 3rd-Generation Fabry Disease Patient

  • Post author:Patient Worthy Contributor
  • Post published:May 7, 2025
  • Post category:Fabry Disease

When asked about the emotions they felt when they were diagnosed, many members of the rare disease community recall a sense of loneliness. Many of us turn to advocacy group…

Continue Reading Lessons Learned as a 3rd-Generation Fabry Disease Patient
Tracking the Effect of Vaccinations on Long Covid Infections in Children and Adolescents

Tracking the Effect of Vaccinations on Long Covid Infections in Children and Adolescents

  • Post author:Rose Duesterwald
  • Post published:May 6, 2025
  • Post category:COVID-19

Current research indicates that children and adolescents who were unvaccinated during the pandemic were much more likely to develop Long COVID. Researchers led by Perelman Medical School at the University of…

Continue Reading Tracking the Effect of Vaccinations on Long Covid Infections in Children and Adolescents
Medical Play

Medical Play

  • Post author:Patient Worthy Contributor
  • Post published:May 5, 2025
  • Post category:Rare Disease

This isn’t a cute extra. It’s essential… Let’s stop calling it fluff and start calling it what it is: trauma-informed care in action. Medical play isn’t just a feel-good initiative…

Continue Reading Medical Play
A Nicotine Patch to Deter Dementia?

A Nicotine Patch to Deter Dementia?

  • Post author:Rose Duesterwald
  • Post published:May 2, 2025
  • Post category:Alzheimer's disease

Humans have been using tobacco as a drug for more than 12,000 years. It wasn't until the early-20th century that the link between tobacco and lung cancer (and other health problems)…

Continue Reading A Nicotine Patch to Deter Dementia?
4 Years. 4 Neurologists. A Young Mom’s Journey to a Friedreich Ataxia Diagnosis

4 Years. 4 Neurologists. A Young Mom’s Journey to a Friedreich Ataxia Diagnosis

  • Post author:Patient Worthy Contributor
  • Post published:May 1, 2025
  • Post category:Friedreich's Ataxia

From Diagnosis to Determination: My Friedreich Ataxia Journey I was always clumsy. I could never walk in a straight line down the street, bumping into my parents and getting told…

Continue Reading 4 Years. 4 Neurologists. A Young Mom’s Journey to a Friedreich Ataxia Diagnosis

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