Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.
Master Chef Christine Ha of Dublin is coping with the fact that an accurate diagnosis years earlier would have prevented her blindness. Christine now spends a great deal of time…
Continue ReadingAward Winning Blind Master Chef Alerts People to the Value of Eye Exams to Prevent Vision Loss
Several years ago, Laura Evans of Clydebank, Scotland received devastating news from her doctor that she only had two years to live. Laura had been diagnosed with a type of…
Continue ReadingMesothelioma Patient Appears Free of Cancer After Deadly Prognosis
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is a…
Continue ReadingCompassion Corner: Study Examines Ways to Approach Patients When Doctors Deliver ‘Bad News’
Although paroxysmal supraventricular tachycardia (PSVT) may not be a common household name, it is experienced by five hundred Americans with over fifty thousand patients visiting hospitals for treatment in…
Continue ReadingAn Experimental Nasal Spray Could Treat a Paroxysmal Supraventricular Tachycardia
A team of researchers at Israel’s Weizmann Science Institute and California University in San Diego linked fungi to approximately 35 cancers. They created a pan-cancer mycobiome atlas exposing new…
Continue ReadingScientists Have Created an Atlas Connecting Fungi to Thirty-Five Cancers
A code for an autism-linked syndrome has now been established and entered into the U.S. diagnostic manual that catalogs health conditions. According to a recent report in Market Watch,…
Continue Reading PTEN Hamartoma Tumor Syndrome Has Been Assigned Its Own Diagnostic Code
Aduhelm was recently approved by the FDA for the treatment of Alzheimer’s disease (AD). The FDA approval, the first in the history of the disease, was based on the drug’s…
Continue ReadingThe Newest Alzheimer’s Treatment Alleviates Some Side Effects but Exacerbates Others
The joy of being told you have a normal healthy newborn can at times be overshadowed by concern about whether the baby has a yet-to-be-discovered disease. Medical technology has helped…
Continue ReadingOctober is the International Gaucher Disease Awareness Month –Join Us – Get Informed and Get Involved
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is…
Continue ReadingCompassion Corner: A Comparison of Empathy vs Compassion in Your Patient-Doctor Relationship
Through its recently issued press release, bluebird bio announced the FDA’s accelerated approval of the first therapy to slow the progression of adrenoleukodystrophy (ALD). The disease is the result…
Continue ReadingICYMI: FDA Approval of SKYSONA to Slow the Progression of Cerebral Adrenoleukodystrophy
Are you ready for the October 2022 Dysautonomia Challenge? You can make this October stand out on your calendar by making each day meaningful, event ladened, exciting, and dedicated…
Continue ReadingThirty-One Days Hath October, and Thirty-one Unique Events Happening for Dysautonomia
The young patients began laughing, and some even began to speak and walk. Imagine the excitement among the hospital staff when they realized that a new medication brought about…
Continue ReadingWill Gene Therapy Save These Children with Rare AADC Deficiency?
This week SciTech Daily published news of the successful eradication of a heretofore incurable form of brain cancer. The research was conducted at Israel’s Tel Aviv University in collaboration with…
Continue ReadingGlioblastoma: Experimental Treatment Eradicates Tumors in Animal Model
The new nonprofit Every Cure has been created on the basis that every drug currently on the market effects multiple areas in the body. This premise has been proven…
Continue ReadingNew Use for Old Drugs Brings Hope to Rare Disease Patients
An article in BioSpace announced that the FDA’s CNS committee met twice in recent months to discuss the merits of AMX0035 for the treatment of amyotrophic lateral sclerosis (ALS). Within…
Continue ReadingA Drug Extending Survival Six Months or More Has Received FDA Approval for ALS
This was the fifth time Yadi Martin was pregnant. The first four pregnancies ended in miscarriages. But this time it was different. The fetus had a heartbeat. As Yadi and…
Continue ReadingAfter Four Miscarriages, Finally a Heartbeat – Then – CHAOS
Neuroscience News recently published an intriguing article suggesting that letrozole, a drug developed to treat breast cancer, has the potential to treat brain tumors. The discovery began with a question…
Continue ReadingCould This Breast Cancer Drug Treat Glioblastoma?
Seven-year-old Rydder Ames of Hamilton, Ohio began having troubling symptoms five months ago. His mother, Krista Steven took him to the ER after a week-long headache followed by a…
Continue Reading7-Year-Old Diagnosed With Diffuse Midline Glioma, a Rare Brain Cancer
Dr. Sergio Baranzini of UC San Francisco recently led an international consortium of researchers in a new study of multiple sclerosis (MS). In a press release on Multiple Sclerosis…
Continue ReadingAltered Gut Bacteria in Multiple Sclerosis Patients Are Associated with Disease Progression
Jim Kelly and his wife Maria still remember the day they received a call from the hospital telling them that according to test results, their daughter Adriana, now age…
Continue ReadingThis Firefighter and Galactosemia Parent Aims to Improve Genetic Testing
A New Theory The Week reports that scientists at the Krembil Brain Institute in Toronto are working on a new theory about the origins of Alzheimer's disease. The Toronto…
Wunmi Bakare described her illness to Essence as a continuous tug-of-war. Balancing sickle cell disease with a nine to five job and trying to stay the course. Then there…
Continue ReadingWith Sickle Cell Disease, a 9 to 5 Job is No Longer Routine
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is a…
Continue ReadingCompassion Corner: One Knowledgeable Doctor Helped a Porphyria Patient Get Outpatient Treatment
ScienceAlert recently published an article explaining how scientists at Rice University have been able to eradicate tumors in mice by using a new treatment that takes less than a…
Continue ReadingImplanted “Drug Factories” Successfully Treat Mice with Mesothelioma
Five patients with acute lupus who received CAR-T were reported to be in remission according to a recent article in StatNews. Researchers are now encouraged by the prospect of treating…
Continue ReadingCAR-T Cell Therapy for Lupus and Other Autoimmune Conditions?
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