Patient Worthy

Patient Worthy® is an online platform dedicated to sharing valuable information with individuals affected by rare diseases, including patients, caregivers, and advocates. Our mission is to educate, raise awareness, and infuse a bit of humor into the serious journey of managing rare conditions. We aim to empower the rare disease community to face their challenges head-on, knowing they have support in their struggles. We advocate for new treatment options, promote awareness, and encourage important conversations, even when they are difficult. At Patient Worthy, many of us have personal experiences with chronic illnesses or rare diseases, either through our own journeys or by supporting loved ones. This unique perspective drives our commitment to research and our passion for raising awareness about rare diseases, which we share through our publication, Rare Patient News. Well Done.®

Trade/B2B, Consumer

English

Online/Digital

Outlet metrics

Domain Authority

Ranking

Global

#1300594

United Kingdom

#149215

Health/Health Conditions and Concerns

#451

Traffic sources

Monthly visitors

Articles

Steps We Can Make Every Day to Decrease Pain and Suffering

1 week ago | patientworthy.com | Tom Seaman

We all know that changing habits of behavior changes our life experiences, but putting this to practice is where a lot of us get stuck. Either we doubt our ability, we are not sure what to do, or we feel overwhelmed with the speed at which life moves and/or the chaos that seems to exist all around. Life these days is “loud,” making it hard to be at peace to put in the work.
The FDA Has Approved Blood Testing for Alzheimer’s Disease

1 week ago | patientworthy.com | Rose Duesterwald

This week, the FDA the first blood-based diagnostic test for Alzheimer’s disease (AD). The test, known as “Lumipulse G pTau 217/β-Amyloid 1-42 Plasma Ratio,” is designed to detect amyloid plaques identified in adults over 55 who have exhibited AD symptoms. This will reduce reliance on PET scans. According to Dr. Howard Fillit, an AD Foundation science official, over seven million people in the United States are known to have the disorder, and that number is on track to double by 2050.
The Different Things That Help My Dystonia The Most - In A Nutshell

1 week ago | patientworthy.com | Tom Seaman

I have had cervical dystonia since 2001. It was very severe for many years, but over time I have been able to gain significant control over my symptoms using a variety of different approaches. I have since written 2 books on the subject (Diagnosis Dystonia: Navigating the Journey, and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges), as well as many articles, but I am still asked what I do that helps me.
An Eleven-Year-Old Girl in Rowlett, Texas is Slated to Make Medical History

3 weeks ago | patientworthy.com | Rose Duesterwald

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 to be treated for this rare disorder. Marley’s family spent years searching for answers but were unable to find any. The family was told Marley’s disorder is rare and disrupts protein production which leads to various neurological and developmental challenges.
A Surprise Diagnosis: Raiden’s Journey with Charcot-Marie-Tooth Disease and Kidney Disease

3 weeks ago | patientworthy.com | Rose Duesterwald

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 remembers the shocked feeling that accompanied the actual diagnosis: Raiden was experiencing Stage 5 kidney failure, otherwise known as end-stage kidney disease. A senior in high school, Raiden is now three months past that diagnosis.
Can Semaglutide Halt or Even Reverse Fatty Liver Disease?

3 weeks ago | patientworthy.com | Rose Duesterwald

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 of fatty liver disease. Semaglutide is classified as a receptor agonist, a drug that binds to a specific receptor and activates a biological response. It is used in the treatment of type-2 diabetes. At higher doses, it is effective for adult weight management.
When They Were Told His Leukemia Had Spread, They Planned a Wedding to Celebrate His Life - PART 2

3 weeks ago | patientworthy.com | Rose Duesterwald

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. Sergio passed on January 11, 2022, after a courageous battle with cancer. In the six months we were given after his diagnosis, we packed a lifetime of adventures into every moment.
Scientists Confirm a 1958 Theory That Has Been Continually Discarded as Impossible

3 weeks ago | patientworthy.com | Rose Duesterwald

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 molecule in water. Yet to everyone’s knowledge, a stable carbene usually decomposes instantly in water. Until recently, the theory was thought to be impossible. Although the idea had some merit, carbenes were unstable and furthermore, no one was able to substantiate that they existed in biology.
Never Give Up: Closing in on Alzheimer’s Disease

1 month ago | patientworthy.com | Rose Duesterwald

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

1 month ago | patientworthy.com | Rose Duesterwald

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 Pennsylvania compared the unvaccinated children against their peers who had been vaccinated against the disease. Upon further analysis, the researchers found that the vaccine’s protection primarily prevents infection rather than providing protection from Long COVID.