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.
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Over ten years ago two Nobel-Prize-winning biologists, Emmanuelle Charpentier and Jennifer Doudna, discovered a technology called CRISPR (clustered regularly interspaced short palindromic repeats). Bacteria contain genetic sequences repeated throughout…
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CRISPR: It Has Only Just Begun
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According to an article published in EuroNews, the National Cancer Institute has announced that MIT researchers have developed a device that can locate cancer cells during urine tests. The device…
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Nanoparticle Diagnostics: One Small Step for Researchers and One Giant Leap Against Cancer
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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…
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Compassion Corner: The Effect of Masking and Distancing on Doctor-Patient Relationship
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A recent article in Parkinson’s News Today announced that a new study indicates that high blood pressure has been associated with Parkinson’s disease in Singapore’s Han population. This is…
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High Blood Pressure is Linked to Parkinson’s Disease in China’s Largest Ethnic Group
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To the vaccinated, it may feel like the COVID-19 pandemic is finally over, but a convergence of the Delta variant, rising long COVID cases, a higher number of breakthrough…
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Long COVID Should Be Considered When Easing Pandemic Restrictions
As reported recently in Medscape, forty-eight patients with myotonic dystrophy type 1 (DM1), were identified by way of the DM-Scope registry, which is the largest collection of data for the DM population. The…
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Metformin May Improve Mobility in Myotonic Dystrophy Type 1 Patients
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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…
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Compassion Corner: The Challenges and Barriers Are Universal
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According to a recent article in Genetic Engineering News, findings by scientists at the University of Boston’s School of Medicine and Massachusetts General Hospital (MGH) have uncovered two plausible…
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Scientists Discover That a Blood Pressure Medication Can Increase Immune-Boosting Cells
The symptoms of terminal pancreatic cancer are subtle. The disease is usually not diagnosed until it has substantially progressed, leaving a dismal five-year overall survival of five to ten percent.…
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The Weather Can Change in an Hour, But a Terminal Cancer Diagnosis Changes Your Life In Minutes
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The primary cause of death in melanoma patients is widespread metastases. Currently, there is no cure in cases of relapse or in advanced stages. A recent article in Science…
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Metastatic Melanoma: Chemotherapy and BRAF Oncogene Inhibitors
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Following several Patient Worthy articles on the subject earlier this year, Fierce Biotech recently published news that Biogen is preparing to release the Phase III VALOR trial drug, tofersen,…
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Is There a Right or Wrong in the Debate Between Patients and Manufacturers to Release Drugs Through Compassionate Use?
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The name of the organization is Disease InfoSearch. It is not only a resource for credible information but guides patients and families to valuable support groups and participation in…
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A Resource for Information About a Rare Disease or Related Organization
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This question is what the doctors at Massachusetts’ Cambridge Hospital were trying to determine. According to a recent article in the New York Times, a twenty-two-year-old man was rushed to…
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If It Looks and Acts Like the Flu but Isn’t the Flu, Then What Is It?
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The patient sitting in front of this physician was later diagnosed with severe chronic fatigue syndrome (myalgic encephalomyelitis or ME/CFS). But for now, the patient had to endure humiliation…
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These Words Are Not Helpful: “Your Test Results are Negative. You Are No Doubt Imagining Most of Your Pain”
The Hindustan Times recently published an article that again puts CRISPR at the forefront of medical news. The newest CRISPR tool was designed to identify Sars-CoV-2 and prevent the transmission…
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New CRISPR Tool Identifies Sars-CoV-2 With the Potential to Prevent Transmission
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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…
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Compassion Corner: Being Human Does Not Take Much Effort; It Only Takes Fifty-six Seconds
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According to an article in NCBI’s Drug In Context, it took the combined services of the internal medicine, neurology, and psychiatry departments to diagnose this rare disease. Anti-NMDAR encephalitis…
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Case Study: Anti-NMDAR Encephalitis
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Researchers at NYU Abu Dhabi (NYUAD) have discovered the code that is associated with the liver’s genome (complete set of DNA) and its ability to regenerate. According to a…
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NYUAD Researchers Identify the Code That Regulates Liver Regrowth: A New Form of Regenerative Medicine May Follow
Beijing, China: According to an article in a sister publication of Sixth Tone, a woman living in China who has been treated during the past fourteen years for paroxysmal nocturnal…
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The First Patient in China to be Accepted Under its 2019 Compassionate Use Policy
Having thoracic outlet syndrome (TOS), a medical condition characterized by the compression of nerves and blood vessels, can hinder a person’s productivity and ability to hold active professions and lifestyles.…
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10 Risk Factors for Thoracic Outlet Syndrome
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Thanks to advances in immunotherapy, liver cancer (Hepatocellular carcinoma-HCC) has seen a rise in treatment options for patients in advanced stages of the disease. HCC is one of the…
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Could Hepatocellular Carcinoma Cause One Million Deaths Annually by 2030?
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The answer lies in the loss of endoplasmic reticulum (ER) calcium and protein which leads to cardiovascular, musculoskeletal, viral, and neurodegenerative diseases. ER performs many important cellular functions including…
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This Cell Organelle Could be a Key Factor in Future Treatments
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Claire Richmond can be considered a very experienced patient. It took Claire nineteen years to receive a diagnosis for her rare disease. During that time, she had been dismissed…
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For People With a Rare Disease, This Patient Recommends Adding a PCP to Your List of Doctors
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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…
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Compassion Corner: Type 1 Diabetes Patient Credits Sansum Clinic with ‘A Lifetime of Compassionate Care’
Clustered Regularly Interspaced Short Palindromic Repeat (CRISPR), according to NCBI, are sequences that replicate and infect bacterial cells. CRISPR has been in the news recently, but this time it has…
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A Breakthrough Using CRISPR’s Gene Editing Technology to Cure a Genetic Disorder