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

Researchers Find Potential Window to Treat Newborn Babies Who Have Inherited Diseases

1 week ago | patientworthy.com | Rose Duesterwald

Researchers have discovered a potential “window” whereby babies born with inherited diseases may be treated with gene therapy sent directly into their circulatory systems. The window consists of circulating stem cells being especially vulnerable to treatment at a particular time. Mice models have been successfully treated in the lab while in-human tests will be arranged in the near future.
Muscular Dystrophy: Experimental Stem Cell Therapy Generates New Heart Tissue

2 weeks ago | patientworthy.com | Rose Duesterwald

The FDA recently informed that it has granted orphan drug designation to the experimental drug ISX9-CPC, a product of the IPS Heart company located in Houston, Texas. The designation awarded to the experimental drug is an incentive to accelerate the creation of treatments for rare diseases that affect under 200,000 people in the U.S. IPS Heart’s stem cell therapy is designed to treat heart issues such as generating new heart tissue.
After a Nationwide Outbreak of EV-D68 in 2014, the CDC Suggests Caution When Treating Children for Respiratory Disease

2 weeks ago | patientworthy.com | Rose Duesterwald

In 2014 the U.S. experienced a nationwide outbreak of EV-D68, raising concerns about children’s respiratory health. Acute flaccid myelitis disease (AFM) also spiked. EV-D68 is defined as a group of enteroviruses like a cold virus. The disease exhibits asthma-like symptoms and spreads among people through sneezing and coughing.
Mitochondrial Dysfunction is Identified by Researchers Seeking a Common Denominator for Gene Mutations Believed to Cause ALS

2 weeks ago | patientworthy.com | Rose Duesterwald

Researchers at the UK Dementia Institute in London (UK DRI) have identified a common denominator for various gene mutations that cause amyotrophic lateral sclerosis (ALS). A new CRISPR study shed light on an ALS-associated dysfunction that was not known previously. The new research shows that when there is an ALS-linked disfunction in the mitochondria, it can indicate an early sign of ALS, even before other visible signs of the disorder appear.
Jenny Decker’s Journey around the world with Charcot-Marie-Tooth Disease continues

3 weeks ago | patientworthy.com | Rose Duesterwald

As many Patient Worthy readers are aware, Jenny Decker, a Charcot Marie Tooth patient, has made a serious commitment to circumnavigate the globe solo despite an incurable and eventually fatal disease. In June 2023, Jenny Decker, 40-year-old trauma nurse, began her voyage with a bright and glorious American flag flying off the bow of her 1884 35.5C Bristol named Tiama. Jenny displays Old Glory when she enters foreign ports as a means of identifying Tiama’s country of origin.
Alzheimer’s: The Answer is That There May Be More Than One Answer

3 weeks ago | patientworthy.com | Rose Duesterwald

A new study by MIT researchers reveals new potential targets such as cellular pathways and genes that have not been previously linked to Alzheimer’s. These results may provide answers to why many of the drugs developed to target Alzheimer’s have not been as effective as promised. As reported by MedicalExpress.com, Ernest Fraenkel, Health Services Professor at MIT’s Biological Engineering Department is the senior author of the new study. Prof.
Steps We Can Make Every Day to Decrease Pain and Suffering

1 month 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 month 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 month 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

1 month 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.