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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The CDC Cautions that a Flea-Borne Disease Is on the Rise in California and Texas

1 week 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 week 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

2 weeks 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

2 weeks 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.
Scientists are in a Race to End the Antibiotic Resistance Cycle

3 weeks ago | patientworthy.com | Rose Duesterwald

Professor Sophia Padilla, lead author of a new study on antibiotic resistance describes the cycle in an article published in UC Irvine’s American Chemical Society Journal. Scientists develop drugs to fight lethal infectionsBacteria create defenses to the drugsResearchers are back at square oneProf. Padilla terms it as the “antibiotic resistance” crisis. She explains that bacteria build defenses against antibiotics. Then they gain more strength and added protection.
Alzheimer’s: A Well-Earned Glimmer of Hope

4 weeks ago | patientworthy.com | Rose Duesterwald

Scientists have earnestly delved into a new study to test a drug for individuals who have genetically inherited a type of early-onset Alzheimer’s disease known as “dominantly inherited Alzheimer’s disease”. Dementia is practically inevitable for this group. The drug that has generated optimism in many cases has eliminated amyloid plaques by fifty percent. Medical News Today reports that the drug is gantenerumab. It has been known to eliminate the risk of developing the disorder for many people.
Scientists Have Discovered a Goldmine of Potential Antibiotics in the Immune System

1 month ago | patientworthy.com | Rose Duesterwald

One Million People: That is an estimate of the number of individuals who die from infections that resist drugs such as antibiotics according to a report in BBC News. Yet, despite the absence of new antibiotics, there has been little research to cope with demand. The new discovery is a process whereby anti-germ molecules are produced within our cells. Professor Daniel Davis, an Imperial College immunologist, explained that the discovery alters the knowledge of the way our bodies fight infection.
Heart Health Heroes Wanted: Join a Clinical Trial to Help Manage ATTR-CM

1 month ago | patientworthy.com | James Moore

Acknowledgment: This story is sponsored by Alexion Pharmaceuticals and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted, and valuable information to the rare disease community. A new clinical trial called the DepleTTR-CM study is underway to understand a potential new treatment for transthyretin amyloid cardiomyopathy (ATTR-CM).
Had High BMI as a Child? Your Risk of Chronic Kidney Disease (CKD) in Adulthood May Be Heightened

1 month ago | patientworthy.com | Jessica Lynn

Editor’s Note: Chronic conditions and rare diseases don’t discriminate, Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a journey to share, click here to learn more about how your voice can help spread awareness and inspire individuals from all walks of life. Body mass index (BMI) is a value derived from someone’s weight and height that indicates weight categories that could lead to health issues.
Inflammatory bowel disease (IBD) affects approximately 1.3% of the U.S. adult population

1 month ago | patientworthy.com | Rose Duesterwald

Inflammatory bowel disease (IBD) affects approximately 1.6 million people in the U.S. According to a report in Healio, this equates to about 1.3% of the adult population. IBD can be described as an inflammatory bowel disease affecting the large intestine and rectum causing ulcers and inflammation along the inner lining of both organs. Data analysis has shown that corticosteroids and other medications used as standard treatment did not have a significant effect on endoscopic or clinical outcomes.