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.®

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Articles

Never Give Up: Closing in on Alzheimer’s Disease

1 week 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 week 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.
A Nicotine Patch to Deter Dementia?

2 weeks ago | patientworthy.com | Rose Duesterwald

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) was established, as discussed in this article by People’s Pharmacy. During the 1950’s, several scientific studies in the UK resulted in doctors first acknowledging the adverse health effects of tobacco use.
New Findings May Lead to Potential Treatments for Blindness Caused by Blunt Trauma

2 weeks ago | patientworthy.com | Rose Duesterwald

Blunt trauma from car accidents contribute to optic nerve damage and blindness. Glaucoma is also responsible for similar optic nerve damage. It is known to be the second worldwide cause of blindness. The September 2025 issue of Experimental Neurology features a report suggesting that it is possible to restore damage to optic nerves that will regrow towards the brain, as reported by the National Eye Institute, part of the NIH.
A Genetically Modified Pig Kidney Set a Record with Four Months Free of Dialysis

3 weeks ago | patientworthy.com | Rose Duesterwald

In 1999, Towana Looney, a resident of Alabama, donated one of her own kidneys to help save her mother’s life. Then Towana waited eight years for an organ transplant that never materialized. Her health was deteriorating. Without receiving a donor match for a transplant, she would die. When Towana heard about the pig kidney transplant, she decided it was a viable option and was cleared for the procedure.
Researchers Urge Awareness About the Risk to Children of Parental Alcohol

1 month ago | patientworthy.com | Rose Duesterwald

A recent study by Texas A&M researchers evaluated the results to male offspring of parental alcohol exposure. The exposure to the chemical diethylnitrosamine was found to be disruptive to mitochondrial, which is called the cell’s powerhouse, as it generates energy via cellular respiration. The drinking habits of either parent, prior to conception, can have a negative impact on fetal development for up to one month after alcohol consumption has ended.
The CDC Cautions that a Flea-Borne Disease Is on the Rise in California and Texas

1 month ago | patientworthy.com | Rose Duesterwald

Due to the efforts of public health officials in the 1940s, Murine typhus was almost eradicated in the United States. However, there now appears to be a resurgence in the U.S. especially in California and Texas. Cases have been reported worldwide while recent deaths have occurred in the county of Los Angeles apparently related to murine typhus, a rare flea-borne disease is caused by the bacteria Rickettsia typhi.
Its ‘Game Over’ When Mosquitos Siphon Human Blood Laced with a Poisonous Drug

1 month ago | patientworthy.com | Rose Duesterwald

Malaria remains responsible for 50,000 deaths annually. An ever-expanding population coupled with malaria gaining resistance to treatments are prominent roadblocks. As reported in Science Alert, the plan is radical. The goal is to control mosquitoes and fight malaria. The process consists of lacing the blood of humans with a low dose of nitisinone known to be poisonous to insects. Nitisinone was granted regulatory approval for the treatment of specific rare and inherited diseases.
Soleno Therapeutics Receives FDA Approval for Prader-Willi Syndrome

1 month ago | patientworthy.com | Rose Duesterwald

Prader-Willi syndrome is a leading cause of obesity in children. The rare disease was discovered over seventy years ago, yet this is the first therapy to be approved by the FDA. Although there are many drivers causing obesity, in the case of Prader Willi, the primary driver is genetic. A recent article in MedCity News explains that patients experience fierce hunger which cannot be satisfied causing families to lock pantries, refrigerators and other food storage areas.
Scientists Discover Mechanism for Liver Regeneration

1 month ago | patientworthy.com | Rose Duesterwald

National Cancer Center researchers have discovered a mechanism for liver regeneration in animal models triggered almost immediately after episodes of severe liver damage. The study, reported in MedicalXpress, explains that the liver is necessary for proper digestion, eliminating toxins and it is crucial for regeneration to replace damaged liver cells. The process occurs within several minutes following severe liver damage with glutamate, an amino acid, in control.