Clinical trialUNITERARE2 days ago
Researchers are testing a new treatment to help cervical cancer survivors who have sexual problems after radiation therapy. The treatment uses biofeedback—a technique that helps you learn to control your pelvic floor muscles—combined with physical rehabilitation exercises. This trial is now accepting patients to see if this approach can improve sexual function and quality of life.
WHY IT MATTERSThis trial directly addresses a common but often overlooked side effect of cervical cancer treatment, offering cervical cancer survivors a non-medication option to restore sexual function after radiation therapy.
NewsRSS5 days ago
People with hemophilia experience pain that lasts long after bleeding episodes are treated. Joint damage from repeated bleeds can cause ongoing discomfort that affects daily life and quality of life. A patient named Thomas Graham shares his experience with how this lingering pain impacts his ability to do everyday activities.
WHY IT MATTERSMany hemophilia patients focus on stopping acute bleeds but don't realize that chronic pain and joint damage from past bleeds can significantly limit their quality of life even when bleeding is controlled.
NewsRSSMay 15
A patient with CIDP (a rare nerve disease that causes weakness and numbness) discovered that hydrotherapy—exercising in warm water—helped treat her symptoms and brought back the joy of swimming that the disease had taken away. Beyond the physical benefits, the treatment improved her quality of life emotionally. This story highlights how certain therapies can address both the medical and personal impacts of living with a rare disease.
WHY IT MATTERSFor CIDP patients struggling with mobility and lost activities, this firsthand account demonstrates that hydrotherapy may offer both symptom relief and psychological benefits that standard treatments alone might not provide.
ResearchRSSMay 14
Vyalev is a new under-the-skin pump that delivers Parkinson's disease medication continuously. In a real-world study, it reduced the amount of time patients experienced symptoms and improved both movement problems and some other symptoms like mood or sleep issues. Patients also reported better quality of life.
WHY IT MATTERSIf you have advanced Parkinson's disease and struggle with medication wearing off between doses, Vyalev offers a continuous delivery option that may reduce symptom fluctuations and improve daily functioning.
NewsRSSMay 13
A person with hemophilia shares their gratitude for having access to treatments that allow them to live a normal life, including everyday activities like deciding what to eat for dinner with their family. The article emphasizes how hemophilia treatments have improved quality of life and shouldn't be taken for granted. Access to these medications makes it possible for people with hemophilia to do things that others might not think twice about.
WHY IT MATTERSThis patient perspective highlights that reliable access to hemophilia treatments directly enables people to participate in normal daily activities and family life without constant worry about bleeding complications.
NewsRSSMay 12
Prader-Willi syndrome (PWS) is a rare genetic condition that causes weak muscles, but staying active can help people with PWS feel stronger and healthier. The article explains that exercise and movement are important ways to manage this symptom and improve quality of life for people living with PWS.
WHY IT MATTERSPeople with PWS face specific challenges with muscle weakness that can affect daily activities, and this article provides practical information about how physical activity can help manage this core symptom.
ResearchBIORXIVMay 6
A new study looked at how often doctors in the UK prescribe tolvaptan, a medicine that slows kidney disease in patients with ADPKD (a genetic condition where cysts grow in the kidneys). The researchers found that some patients who should get this medicine don't receive it, while others who aren't eligible do get it. This variation in prescribing patterns may affect how well patients do and how much the healthcare system spends.
WHY IT MATTERSIf you have ADPKD in the UK, this research could help explain why access to tolvaptan—the only disease-slowing treatment available—varies depending on which kidney center treats you.
NewsRSSApr 29
This article shares a personal story about the author's uncle who had Parkinson's disease and was known for his skill at grilling and cooking. The piece explores how caregiving for someone with Parkinson's involves helping them maintain activities and hobbies they love, even as the disease takes away their abilities. It highlights the importance of preserving quality of life and meaningful experiences for people living with Parkinson's.
WHY IT MATTERSFor Parkinson's caregivers, this article emphasizes that supporting a loved one means actively helping them continue doing the things that bring them joy and define who they are, not just managing medical symptoms.
ResearchPUBMEDApr 29
Researchers in the Netherlands are creating a large database to collect information about small intestinal adenocarcinoma, a rare type of cancer that starts in the small intestine. They're gathering medical records, tumor samples, and patient feedback to better understand how this cancer develops and which treatments work best. This study is important because doctors currently don't have enough information to know the best way to treat this disease.
WHY IT MATTERSFor the first time, patients with small intestinal adenocarcinoma will have their disease studied systematically in a large prospective cohort, which could lead to treatment recommendations tailored specifically to this rare cancer instead of borrowed from other gastrointestinal cancers.