AdvocacyRSSToday
A caregiver shares his personal story about losing his wife Mary Ann to ALS (a disease that affects nerve cells controlling muscles) after 34 years of marriage. The article describes their medical journey, which began with neurologic symptoms in 2011 and initially included a misdiagnosis of Parkinson's disease before she was correctly diagnosed with ALS.
WHY IT MATTERSThis personal account highlights the diagnostic challenges ALS patients face—Mary Ann was initially misdiagnosed with Parkinson's disease—which is important for newly symptomatic patients to understand they may need multiple evaluations before getting an accurate diagnosis.
AdvocacyRSS2 days ago
A parent shares their experience watching their son Julian improve at taking his hemophilia treatment over the years. The article highlights how better treatment adherence—actually taking medications as prescribed—has helped their son pursue his dreams, like performing on Broadway. This personal story shows how managing a chronic condition can get easier with time and support.
WHY IT MATTERSFor families managing hemophilia, this firsthand account demonstrates that treatment adherence improves with age and practice, which can help prevent bleeding complications and allow children to participate fully in activities they love.
NewsRSS2 days ago
This article shares a personal story from a caregiver whose husband Todd has ALS (a disease that causes paralysis and muscle weakness). While showering and caring for her husband, she discovered a song called 'Mercy Now' that resonated with the challenges the ALS community faces. The piece highlights the emotional and physical toll of living with ALS on both patients and their families.
WHY IT MATTERSCaregivers of ALS patients often experience isolation and emotional burden—this story validates those experiences and may help others feel less alone in their caregiving journey.
NewsRSS3 days ago
A family shares their personal story about how their uncle Brandon's Parkinson's disease diagnosis challenged and changed their family's approach to faith and difficult conversations. The article explores how a serious neurological illness forced the family to move beyond surface-level discussions and address deeper emotional and spiritual questions they had previously avoided.
WHY IT MATTERSPersonal stories from families living with Parkinson's disease help newly diagnosed patients and caregivers understand that emotional and spiritual struggles are common, and that open family conversations can be part of the healing process.
AdvocacyRSS3 days ago
A mother shares her personal story about raising two sons with severe hemophilia A, a bleeding disorder where the blood doesn't clot properly. She describes how she has had to stay strong and vigilant while caring for her children and managing the challenges that come with this lifelong condition.
WHY IT MATTERSPersonal stories from hemophilia caregivers help newly diagnosed families understand what to expect and show that others have navigated similar challenges successfully.
NewsRSS3 days ago
This article discusses how people with hemophilia can receive effective care through different treatment approaches. The author shares a personal story about managing hemophilia while enjoying life activities like cooking on their new patio, showing that the condition doesn't have to stop you from doing things you enjoy.
WHY IT MATTERSPeople with hemophilia benefit from knowing that multiple treatment strategies can work equally well, giving them and their doctors flexibility to choose the approach that fits best with their lifestyle and preferences.
AdvocacyRSS5 days ago
Thomas Graham shares his personal story about fighting with insurance companies to get the hemophilia treatment he needs. The article explains the barriers patients face when trying to access care and emphasizes that patients need to speak up for themselves. Insurance denials and delays are common problems for people with hemophilia, and knowing how to advocate can make a real difference.
WHY IT MATTERSHemophilia patients often face insurance denials or delays for clotting factor treatments, and learning advocacy strategies from patient experiences can help others navigate these barriers more effectively.
NewsRSSMay 15
A mother shares her experience raising three sons with Duchenne muscular dystrophy (DMD), a genetic disease that causes progressive muscle weakness. The article highlights the unique challenges of parenting multiple children with the same rare condition. This is a personal story about family life with DMD rather than medical news.
WHY IT MATTERSFamily perspectives on managing multiple children with DMD can help other parents understand the emotional, practical, and medical challenges they may face and feel less alone in their experience.
NewsRSSMay 14
A patient shares their personal story about being diagnosed with SMA (spinal muscular atrophy) as a premature baby and the emotional toll it took on their young mother. The article explores how their mother sacrificed greatly to care for them while facing blame and judgment from others who didn't understand the condition. This is a first-person account of living with SMA and the family impact of a serious genetic disease.
WHY IT MATTERSPersonal stories from SMA patients and caregivers help newly diagnosed families understand the emotional and practical realities of living with this condition, which can inform their own care planning and coping strategies.
AdvocacyRSSMay 14
A person shares their family's experience after their father was diagnosed with ALS, a serious disease that gets worse quickly. The article talks about how families suddenly have to learn about a disease they don't understand and search for answers and care. This is a personal story about what it's like when someone you love gets diagnosed with ALS.
WHY IT MATTERSThis article highlights the urgent need for faster diagnosis and care pathways in ALS, where families have limited time to find answers before the disease progresses.
NewsRSSMay 13
This article shares a family's personal story about how Parkinson's disease changed their uncle Brandon's life. Before his diagnosis, he was very active and social, always organizing gatherings and staying busy. The disease slowed down his movement and energy, which also affected the family's routines and how they spent time together.
WHY IT MATTERSPersonal stories from families living with Parkinson's can help newly diagnosed patients and caregivers understand how the disease affects daily life and relationships beyond just the medical symptoms.
NewsRSSMay 13
This article is a personal story about a family who adopted a rescue dog named Ellie and her puppies. The story was published on SMA News Today, a website about spinal muscular atrophy, but the article itself is about pet adoption and does not contain any medical or rare disease information.
WHY IT MATTERSThis article does not contain information relevant to rare disease patients or caregivers.
AdvocacyRSSMay 11
This article shares a personal story about attending MDA Summer Camp, a program run by the Muscular Dystrophy Association for people with muscle diseases. The author reflects on lessons learned at camp about community, support, and why showing up for others matters. The piece emphasizes the emotional and social value of connecting with others who have similar health challenges.
WHY IT MATTERSFor patients and families affected by muscular dystrophy, this article highlights how peer support programs like MDA Summer Camp can provide emotional benefits and a sense of belonging that goes beyond medical treatment.
AdvocacyRSSMay 11
A person shares their personal story about living with muscular dystrophy, describing how they noticed symptoms starting at age 9—like difficulty lifting their arms, getting tired quickly, and being slower than friends. The article focuses on how patients can move forward and take action after receiving a diagnosis, rather than dwelling on limitations.
WHY IT MATTERSThis patient perspective highlights the importance of recognizing early warning signs of muscular dystrophy in children and emphasizes that a diagnosis doesn't mean giving up—it's an opportunity to focus on what you can still do.
AdvocacyRSSMay 8
A parent shares their family's experience with Duchenne muscular dystrophy (DMD), a serious genetic muscle disease that affects three of their seven children. The article focuses on a conversation with their daughter about what it means to be a carrier of the DMD gene—someone who carries the genetic change but may or may not develop symptoms themselves. This personal story helps families understand how DMD affects multiple family members and the importance of genetic counseling.
WHY IT MATTERSFamilies with DMD carriers need clear information about inheritance patterns and what carrier status means for their own health and future children, which this firsthand account provides.
NewsRSSMay 8
This article shares a patient's personal story about living with AATD (Alpha-1 Antitrypsin Deficiency), a rare genetic lung disease. While AATD can be challenging to manage, the author describes unexpected positive ways it has changed their life. The piece focuses on the emotional and personal benefits of living with this condition rather than medical treatments.
WHY IT MATTERSPatient perspectives on living with AATD can help newly diagnosed patients understand that quality of life and personal growth are possible despite managing a serious rare disease.
NewsRSSMay 7
A parent shares a personal story about three important women in their life who have supported their two sons, Julian and Caeleb, who both have hemophilia A—a bleeding disorder where the blood doesn't clot properly. Each woman handled the diagnosis and care differently, showing different ways families can cope with and manage a rare disease.
WHY IT MATTERSThis article highlights how families living with hemophilia A navigate diagnosis and ongoing care, offering real-world perspectives that may help newly diagnosed families understand different approaches to managing a lifelong bleeding disorder.
NewsRSSMay 6
A clergy member shares a personal story about hemophilia, a bleeding disorder that runs in families, and reflects on not having the opportunity to ask their mother about the family's medical history before she passed away. The article emphasizes how important family conversations about genetic conditions can be for understanding health risks.
WHY IT MATTERSPeople with hemophilia in their family need to understand their own risk and genetic inheritance pattern, which requires knowing family medical history — information that may be lost if not discussed while relatives are alive.
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.
AdvocacyRSSApr 27
A personal story about a man named Jared who has severe hemophilia B (a bleeding disorder) and seizures since childhood. The article highlights how teachers and classmates treated him as 'special' or different on his first day of fifth grade, showing how invisible illnesses can affect children socially and emotionally, not just physically.
WHY IT MATTERSChildren with hemophilia B and other invisible illnesses often face social stigma and misunderstanding in school settings, which can impact their mental health and quality of life as much as the medical condition itself.