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.
The study was intended to recruit 6,000 Alzheimer's patients, but even after recruiting had proceeded for seven months, just 29 patients were enrolled. As a result, the trial was cancelled,…
Continue ReadingAlzheimer’s Study Cancelled After 29 Patients Enrolled Rather Than the Anticipated 6000
The novel program called BeginNGS™ was described in a recent article which has a goal of testing for five hundred disorders and several thousand infants. Rady Children's Institute for…
Continue ReadingNew Program Evaluates the Adaptability of Precision Medicine to Identify Over 400 Genetic Disorders and Potential Treatments
Genetic testing has always been costly and directed at DNA sequencing. Only a limited number of genes could be tested. It was useful to a small number of patients…
Continue ReadingImproved Genetic Testing Brings a More Accurate Diagnosis of Primary Immunodeficiency Disorders
IBD (inflammatory bowel disease) is an umbrella term for ulcerative colitis and Crohn’s disease involving chronic inflammation in the digestive tract. Common symptoms are fatigue, pain, and reduction in appetite.…
Continue ReadingStudy: H. Pylori in a New, Beneficial Role in Inflammatory Bowel Disease
Liver cirrhosis (scarring) can be fatal because damage to the liver is irreversible. A cirrhotic liver leads to liver failure, liver cancer, and eventually death. According to a report in…
Continue ReadingPatients with Liver Diseases Causing Cirrhosis May Be Predisposed to HCC
According to an article recently published in Targeted Oncology, the FDA approved olaparib (Lynparza), a product of AstraZeneca Pharmaceuticals, in March of this year. Lynparaza will be used as adjuvant…
Continue ReadingThe FDA Approves Olaparib for BRCA-mutated HER2 Early Breast Cancer
The medical term for an “informal caregiver” describes a person who willingly takes the responsibility to help a spouse, family member, friend, or partner. The level of care and responsibility…
Continue ReadingCancer Commons Presents a Webinar Recording: You’re Not Alone—Validating the Caregiver Experience
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: Your Illness is Real: How to be Seen, Heard, and Treated with Compassion
According to a recent article in The British publication The Economic Times, a group of researchers at McMaster University have a win-win proposal for myotonic dystrophy (MD) patients. Eleven people were…
Continue Reading12 Weeks of Exercise Increased Fitness in Myotonic Dystrophy Patients
Thanks to Amylyx Pharmaceuticals, Canada becomes the first country worldwide to have access to an ALS drug branded Albrioza (originally AMX0035). According to an article in Yahoo News, the drug…
Continue ReadingCanada Approves its Third Drug For Amyotrophic Lateral Sclerosis (ALS)
In normal development, genes are usually inherited in pairs - with one copy from the father and one inherited from the mother. When one copy of the TCF4 gene, which…
Continue ReadingA New Study Finds That Gene Therapy May Prevent or Reverse Pitt-Hopkins Syndrome
We have been told occasionally that certain phrases we use when speaking with a terminally ill patient may sound insensitive. We have also been told what we should not say…
Continue ReadingDo We Need a “Rule Book” to Speak With Terminally Ill Patients?
Pancreatic cancer is one of the deadliest forms of cancer. According to the American Cancer Society (ACS), only about 11% of patients are expected to survive more than five years…
Continue ReadingA Novel Treatment for Pancreatic Cancer, a Deadly Disease
Lately, the first thing that enters a person’s mind if they encounter an unusual pain is that they may have cancer. Yet that was the last thing Georgina Masson, an…
Continue ReadingThey Diagnosed Tonsillitis, But it Was Actually Acute Myeloid Leukemia
Sydney Miller, born in the UK in March 2020, has an extremely rare disease. Newsweek recently carried a story about Sydney and her illness. This little girl captured the hearts…
Continue ReadingPrimrose Syndrome Affects Only Fifty Children Worldwide
Leukemia, in general terms, is a form of cancer that affects the bone marrow and blood cells. According an article in Medical News Today, leukemia is categorized in accordance…
Continue ReadingAn Overview of Chronic Lymphocytic Leukemia (CLL)
The Irish Times recently featured a book by Dr. Karl Herrup about “How Not to Study a Disease." Dr. Herrup is clear that he opposes the theory that the amyloid…
Continue ReadingWhat Causes of Alzheimer’s? Time for a New Direction
Medscape recently published an article stating that the EMA is conducting a review of rucaparib, a drug used to treat patients with a range of ovarian cancers that have relapsed. These…
Continue ReadingThe EMA is Reviewing the Ovarian Cancer Drug Rucaparib After New Reports
Data based on approximately five million people suggests that esophageal cancer has nearly doubled from 2012 through 2019. According to a recent report in MSN, the incidence of precancerous Barrett’s…
Continue ReadingThe ACS Estimates That Esophageal Cancer Almost Doubled From 2012-2019
On January 9th, Jacob Wiley was preparing to see his three-year-old daughter Adelaide in the hospital. It was a day that Jacob and his wife Ashley will never forget.…
Continue ReadingTango 2 and Kawasaki Disease: Their Two Daughters Have Potentially Fatal Diseases
EDIT-301 is an investigational, gene editing medicine developed by Editas Medicine for the treatment of beta thalassemia. As recently reported in the Business Insider, EDIT-301 has just been granted the…
Continue ReadingFDA Grants Rare Pediatric Disease Designation for Experimental Beta Thalassemia Drug
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: Patient Survives Stage 4 Ovarian Cancer and Credits Her Compassionate Oncologist
Dr. Anthony Fauci, NIAID Director, and his colleagues have suggested the possible use of a promising new vaccine for people at high risk of contracting a rare, deadly mosquito-borne virus.…
Continue ReadingNew Vaccine for Equine Encephalitis Virus in the Works
Mandy Maysey is a 49-year-old mum living in Australia with her three children, who are all coping with an unpredictable disorder. Tourette syndrome (TS) is a neurological disorder involving repetitive…
Continue ReadingLoving and Living With Three Children Who Have Tourette Syndrome
Patients are advised to look for and report symptoms of a mysterious liver disease that has recently caused the death of three Indonesian children. Newsmax’s most up-to-date reports state that…
Continue ReadingThe CDC Issues a Nationwide Health Alert to Report Pediatric Hepatitis Cases
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