Latest news with #Ehlers-Danlos
Scottish Sun
06-05-2025
- Health
- Scottish Sun
The simple 30-second finger test that can reveal your risk of devastating incurable disease
Plus, other signs of the disease to look out for HANDS TELL ALL The simple 30-second finger test that can reveal your risk of devastating incurable disease Click to share on X/Twitter (Opens in new window) Click to share on Facebook (Opens in new window) JOINT flexibility is important for healthy movement and function. But being able to move your joints in an extraordinary way could be a sign of Ehlers-Danlos syndromes (EDS). Sign up for Scottish Sun newsletter Sign up 3 A simple finger test can reveal if you're at risk of Ehlers-Danlos syndromes Credit: Getty 3 EDS makes joints hypermobile and skin can be stretched further than normal Credit: Getty EDS are a group of inherited disorders that affect connective tissues, primarily the skin, joints, and blood vessels. These disorders result from genetic mutations that impact the production or structure of collagen, a key protein that provides support and structure to various tissues. EDS is characterised by joint hypermobility - an increased range of motion in the joints, making them more flexible than average. Skin can stretch further than normal, joints bend too far and sometimes dislocate, and internal tissues bruise or tear more easily. According to Jeannie Di Bon, a UK-based hypermobility and EDS specialist, just because you're hypermobile doesn't automatically mean something's wrong with your connective tissue or that you've got a syndrome. But if hypermobility begins to really bother you and suddenly becomes very problematic (often overnight), it could be cause for investigation for a connective tissue disorder, such as EDS, Di Bon told Newsweek. Easy test for hypermobility 3 If your thumb can be bent backward so that it touches or goes beyond the palm of your hand or wrist it could mean you have greater joint hypermobility Credit: Getty The nine-point Beighton score is a simple assessment tool used to evaluate joint hypermobility. It involves testing the flexibility of several joints, with each positive result adding a point to the score. A higher score generally indicates greater joint hypermobility. The score is calculated by adding up the points earned for each of the five tests. What is Raynaud's disease? If the finger can be bent back more than 90 degrees - one point for each hand. If the thumb can be bent backward so that it touches or goes beyond the palm of the hand or wrist - one point for each hand. Being able to extend the elbow beyond 10 degrees - one point for each elbow. Being able to extend the knee beyond 10 degrees - one point for each knee. The ability to bend forward from the waist, with knees fully extended, and touch the palms flat on the floor- one point if the palms can touch the floor. A score of more than five out of nine, for an adult, indicates a person has hypermobility. For a child, it's a score of at least six out of nine. The score alone doesn't confirm EDS. A hypermobile-EDS diagnosis is "based on a checklist where the patient meets certain criteria, including a Brighton score level," Dr Bernadette Riley, director of the Ehlers‑Danlos Syndrome/Hypermobility Treatment Center at New York Institute of Technology's College of Osteopathic Medicine, told Newsweek. Official figures for diagnosed cases of EDS in the UK are around 135,000 to 300,000. The actual number of people living with the condition is likely higher due to underdiagnosis and misdiagnosis. EDS can manifest at different ages, depending on the specific type, with some forms being evident at birth and others not being diagnosed until adulthood. While symptoms of inherited EDS can be present at birth, they may not be noticeable until puberty. Some milder forms are often not diagnosed until early adulthood, while more severe types are typically diagnosed in childhood. Symptoms of Ehlers-Danlos Syndromes Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue. Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones. EDS can affect people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling. Different types of EDS are caused by faults in certain genes that make connective tissue weaker. There are 13 types of EDS, most of which are rare. Hypermobile EDS (hEDS) is the most common type. Several types of EDS may share some symptoms. These include: an increased range of joint movement (joint hypermobility) stretchy skin fragile skin that breaks or bruises easily If you suspect symptoms of EDS, speak to your GP. Source: NHS People with EDS have also been found to be more susceptible to respiratory issues, including a range of symptoms from shortness of breath and exercise limitations to conditions like pneumothorax. A 2022 study published in Respiratory Medicine and Research found that almost 85 percent of EDS patients had signs of respiratory problems. And mental health conditions are also widely reported among EDS patients. Another 2022 study found almost half of the EDS patients surveyed had depression and over half had "probable" anxiety. There's no cure for EDS, however, various treatments and lifestyle adjustments can help manage symptoms, prevent complications, and improve quality of life.
The Sun
06-05-2025
- Health
- The Sun
The simple 30-second finger test that can reveal your risk of devastating incurable disease
JOINT flexibility is important for healthy movement and function. But being able to move your joints in an extraordinary way could be a sign of Ehlers-Danlos syndromes (EDS). 3 EDS are a group of inherited disorders that affect connective tissues, primarily the skin, joints, and blood vessels. These disorders result from genetic mutations that impact the production or structure of collagen, a key protein that provides support and structure to various tissues. EDS is characterised by joint hypermobility - an increased range of motion in the joints, making them more flexible than average. Skin can stretch further than normal, joints bend too far and sometimes dislocate, and internal tissues bruise or tear more easily. According to Jeannie Di Bon, a UK-based hypermobility and EDS specialist, just because you're hypermobile doesn't automatically mean something's wrong with your connective tissue or that you've got a syndrome. But if hypermobility begins to really bother you and suddenly becomes very problematic (often overnight), it could be cause for investigation for a connective tissue disorder, such as EDS, Di Bon told Newsweek. Easy test for hypermobility 3 The nine-point Beighton score is a simple assessment tool used to evaluate joint hypermobility. It involves testing the flexibility of several joints, with each positive result adding a point to the score. A higher score generally indicates greater joint hypermobility. The score is calculated by adding up the points earned for each of the five tests. What is Raynaud's disease? If the finger can be bent back more than 90 degrees - one point for each hand. If the thumb can be bent backward so that it touches or goes beyond the palm of the hand or wrist - one point for each hand. Being able to extend the elbow beyond 10 degrees - one point for each elbow. Being able to extend the knee beyond 10 degrees - one point for each knee. The ability to bend forward from the waist, with knees fully extended, and touch the palms flat on the floor - one point if the palms can touch the floor. A score of more than five out of nine, for an adult, indicates a person has hypermobility. For a child, it's a score of at least six out of nine. The score alone doesn't confirm EDS. A hypermobile-EDS diagnosis is "based on a checklist where the patient meets certain criteria, including a Brighton score level," Dr Bernadette Riley, director of the Ehlers‑Danlos Syndrome/Hypermobility Treatment Center at New York Institute of Technology's College of Osteopathic Medicine, told Newsweek. Official figures for diagnosed cases of EDS in the UK are around 135,000 to 300,000. The actual number of people living with the condition is likely higher due to underdiagnosis and misdiagnosis. EDS can manifest at different ages, depending on the specific type, with some forms being evident at birth and others not being diagnosed until adulthood. While symptoms of inherited EDS can be present at birth, they may not be noticeable until puberty. Some milder forms are often not diagnosed until early adulthood, while more severe types are typically diagnosed in childhood. Symptoms of Ehlers-Danlos Syndromes Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue. Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones. EDS can affect people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling. Different types of EDS are caused by faults in certain genes that make connective tissue weaker. There are 13 types of EDS, most of which are rare. Hypermobile EDS (hEDS) is the most common type. Several types of EDS may share some symptoms. These include: an increased range of joint movement (joint hypermobility) stretchy skin fragile skin that breaks or bruises easily If you suspect symptoms of EDS, speak to your GP. Source: NHS People with EDS have also been found to be more susceptible to respiratory issues, including a range of symptoms from shortness of breath and exercise limitations to conditions like pneumothorax. A 2022 study published in Respiratory Medicine and Research found that almost 85 percent of EDS patients had signs of respiratory problems. And mental health conditions are also widely reported among EDS patients. Another 2022 study found almost half of the EDS patients surveyed had depression and over half had "probable" anxiety. There's no cure for EDS, however, various treatments and lifestyle adjustments can help manage symptoms, prevent complications, and improve quality of life.
Yahoo
14-04-2025
- Health
- Yahoo
Being Disabled Made Me a Better Parent
When my daughter was a few months old, I joined a group for new moms. We brought our babies and talked for a couple of hours each Wednesday in a community center in Oakland, California. I was an unusual parent within that group. Unlike the other moms, I hadn't given birth. At the time, I was fostering my daughter, though my husband and I have now adopted her. I was the only disabled parent, at least as far as I know; I have a connective-tissue disorder, Ehlers-Danlos syndrome, and an associated neurological condition, postural orthostatic tachycardia syndrome. Based on what the other moms were sharing, I also seemed to be having an easier time than they were adjusting to parenthood. While they described uncertainty about their identities and worry about the intensity of their babies' demands, my experience was relatively peaceful. That last difference surprised me. I rationalized that it was probably because the other moms were recovering from giving birth and I was not. Still, I never expected that while parenting inside a body that gets injured from rolling over in bed, I might have an easier time than my nondisabled counterparts. I've begun to suspect, however, that my experience adjusting to parenthood wasn't unique among disabled people. Over the past few years, I've interviewed dozens of disabled and nondisabled parents from various racial, ethnic, and socioeconomic backgrounds. I met most of the disabled parents through a Facebook group; most had physical disabilities, though some had intellectual or neurological ones. The nondisabled parents were mostly my own friends or acquaintances. Obviously, my sample was far from representative, and I was not conducting an academic study. My goal was to informally identify some common struggles for each group in the early weeks and months of parenting. During my conversations, I began to notice a pattern. I now believe that being disabled and learning from disability culture both prepared me for the challenges of early parenthood and ultimately set me up to be a more creative and flexible caregiver. One way to think about the first week of parenthood is as a time when a large portion of a family is or becomes temporarily disabled. Not only does a new baby require relentless attention, but whoever gave birth also typically does. Even if you adopted a child, as I did, you're likely exhausted. For those who aren't disabled, suddenly being forced to rely on other people for their basic bodily needs, while also assuming responsibility for a human being who demands so much from them, can be terrifying. As Jennifer Natalya Fink argues in All Our Families: Disability Lineage and the Future of Kinship, people tend to be afraid of disability because they are afraid of needing care. And just about anyone requires care postpartum. Most of the nondisabled parents I spoke with characterized the first week after bringing a baby home as one of the most challenging times of their life. For some, meeting their new child's needs—and the specter of a future oriented around those needs—felt impossible. Rachel Somerstein, the author of Invisible Labor: The Untold Story of the Cesarean Section, told me that when her daughter cried, she sometimes got so overwhelmed that she became certain the baby would do so nonstop until college. Other mothers told me that some of their darkest moments came when their own body didn't cooperate. One interviewee described falling asleep on the floor and getting trapped there for 20 minutes after she awoke because her stomach muscles were so damaged that she couldn't find a way to get herself up. She and the other mothers I spoke with were coming to terms with the frightening reality that we cannot, through the force of our will and behavior, make our babies or our body do what we want them to. [Read: The truth about America's most common surgery] The disabled people I spoke with, by contrast, had spent years of living in a body that rebelled and failed, and many had learned the hard way that recovery from surgery is long and arduous and that the body is impossible to predict. One mother, Jessie Owen, who became quadriplegic after a car accident in her 20s and gave birth to twins via C-section, told me that although she had preeclampsia and prolonged high blood pressure after giving birth, her first week with her baby went smoothly. She knew what to expect, and she was ready to get creative with taking care of herself. 'Dealing with recovery was pretty breezy,' Owen told me. 'I didn't feel great, for sure, but it wasn't all that bad.' Of course, not every disabled and nondisabled person has the experience of the people I've interviewed, and disability is not the only factor that influences anyone's early days of parenting. In my case, I had a safe and kind partner, financial stability, a history of fairly robust mental health, and no physical trauma from childbirth. But being disabled, while making parenting harder for me in some respects, has also taught me invaluable lessons. As a disabled person in an inaccessible world, I am accustomed to innovating and problem-solving throughout the day. Parenting requires many of the same skills. 'Disabled people have years of figuring out how to get along,' Lisa Iezzoni, a professor of medicine at Harvard who studies disabled-health-care access and is herself disabled, told me. 'Every day, we navigate a world not designed for us. It's no wonder we would be particularly well equipped to navigate something new, like parenthood.' Nearly anyone about to welcome a baby is going to make a plan—and at some point, that plan is going to go wrong. Parents with a firm vision of how things should turn out may be devastated when reality deviates from that expectation. But disabled parents may be less likely to be surprised when they have to adjust, and less likely to blame themselves. In the decade-plus that I've been disabled, I've learned, through repeated disappointments, that I should expect problems. This attitude might seem pessimistic, but it can actually be protective. When one thing falls apart, I don't automatically assume that everything will. For example, in 2024, we had our second baby, this time through surrogacy. The birth was difficult. Our surrogate and our baby both experienced complications and almost didn't make it. But even in the most harrowing moments, I fought to maintain a sense of equilibrium. Disabled parents, like all parents, are flawed, but embracing imperfection may be one of the most valuable lessons a parent can learn. I once thought that with healthy eating, the right choices, and hard work, I could achieve an ideal life. But then, at 28, I became disabled. As I realized that I could not regain my old capacities despite doing absolutely everything in my power, my worldview started to shift. I confronted what my pursuit of perfection could—and couldn't—accomplish. [Read: Perfectionism can become a vicious cycle in families] Today, I'm less hard on myself for what others might see as early-parenting shortcomings: feeding my kids formula, taking a chaotic approach to their sleep schedule, leaving the TV on in the background too much. I can recognize my missteps as relatively minor. And I'm more willing to accept help as well. Before I met my partner and had a child, friends took me to the doctor, hung my shower curtains, and brought my trash to the curb. Having become accustomed to community support, asking for aid with a new baby didn't scare me. You don't have to be disabled to adopt this mindset—in fact, elements of it might be a balm for any parent. In some cases, this might mean not obsessing over the expensive stroller you can't afford and instead making do with the safe one passed down from a neighbor. In others, it might mean asking for more help at night. This vision of parenthood may seem less aspirational. But flexibility and compassion are vital when your body is sore from labor, no one is sleeping through the night, and your family dynamic has shifted beyond recognition. Once you learn to show yourself compassion, you may finally see, as I did, that you are giving your baby exactly what they need. This essay has been adapted from Jessica Slice's forthcoming book, Unfit Parent. Article originally published at The Atlantic
Atlantic
14-04-2025
- Health
- Atlantic
Being Disabled Made Me a Better Parent
When my daughter was a few months old, I joined a group for new moms. We brought our babies and talked for a couple of hours each Wednesday in a community center in Oakland, California. I was an unusual parent within that group. Unlike the other moms, I hadn't given birth. At the time, I was fostering my daughter, though my husband and I have now adopted her. I was the only disabled parent, at least as far as I know; I have a connective-tissue disorder, Ehlers-Danlos syndrome, and an associated neurological condition, postural orthostatic tachycardia syndrome. Based on what the other moms were sharing, I also seemed to be having an easier time than they were adjusting to parenthood. While they described uncertainty about their identities and worry about the intensity of their babies' demands, my experience was relatively peaceful. That last difference surprised me. I rationalized that it was probably because the other moms were recovering from giving birth and I was not. Still, I never expected that while parenting inside a body that gets injured from rolling over in bed, I might have an easier time than my nondisabled counterparts. I've begun to suspect, however, that my experience adjusting to parenthood wasn't unique among disabled people. Over the past few years, I've interviewed dozens of disabled and nondisabled parents from various racial, ethnic, and socioeconomic backgrounds. I met most of the disabled parents through a Facebook group; most had physical disabilities, though some had intellectual or neurological ones. The nondisabled parents were mostly my own friends or acquaintances. Obviously, my sample was far from representative, and I was not conducting an academic study. My goal was to informally identify some common struggles for each group in the early weeks and months of parenting. During my conversations, I began to notice a pattern. I now believe that being disabled and learning from disability culture both prepared me for the challenges of early parenthood and ultimately set me up to be a more creative and flexible caregiver. One way to think about the first week of parenthood is as a time when a large portion of a family is or becomes temporarily disabled. Not only does a new baby require relentless attention, but whoever gave birth also typically does. Even if you adopted a child, as I did, you're likely exhausted. For those who aren't disabled, suddenly being forced to rely on other people for their basic bodily needs, while also assuming responsibility for a human being who demands so much from them, can be terrifying. As Jennifer Natalya Fink argues in All Our Families: Disability Lineage and the Future of Kinship, people tend to be afraid of disability because they are afraid of needing care. And just about anyone requires care postpartum. Most of the nondisabled parents I spoke with characterized the first week after bringing a baby home as one of the most challenging times of their life. For some, meeting their new child's needs—and the specter of a future oriented around those needs—felt impossible. Rachel Somerstein, the author of Invisible Labor: The Untold Story of the Cesarean Section, told me that when her daughter cried, she sometimes got so overwhelmed that she became certain the baby would do so nonstop until college. Other mothers told me that some of their darkest moments came when their own body didn't cooperate. One interviewee described falling asleep on the floor and getting trapped there for 20 minutes after she awoke because her stomach muscles were so damaged that she couldn't find a way to get herself up. She and the other mothers I spoke with were coming to terms with the frightening reality that we cannot, through the force of our will and behavior, make our babies or our body do what we want them to. The disabled people I spoke with, by contrast, had spent years of living in a body that rebelled and failed, and many had learned the hard way that recovery from surgery is long and arduous and that the body is impossible to predict. One mother, Jessie Owen, who became quadriplegic after a car accident in her 20s and gave birth to twins via C-section, told me that although she had preeclampsia and prolonged high blood pressure after giving birth, her first week with her baby went smoothly. She knew what to expect, and she was ready to get creative with taking care of herself. 'Dealing with recovery was pretty breezy,' Owen told me. 'I didn't feel great, for sure, but it wasn't all that bad.' Of course, not every disabled and nondisabled person has the experience of the people I've interviewed, and disability is not the only factor that influences anyone's early days of parenting. In my case, I had a safe and kind partner, financial stability, a history of fairly robust mental health, and no physical trauma from childbirth. But being disabled, while making parenting harder for me in some respects, has also taught me invaluable lessons. As a disabled person in an inaccessible world, I am accustomed to innovating and problem-solving throughout the day. Parenting requires many of the same skills. 'Disabled people have years of figuring out how to get along,' Lisa Iezzoni, a professor of medicine at Harvard who studies disabled-health-care access and is herself disabled, told me. 'Every day, we navigate a world not designed for us. It's no wonder we would be particularly well equipped to navigate something new, like parenthood.' Nearly anyone about to welcome a baby is going to make a plan—and at some point, that plan is going to go wrong. Parents with a firm vision of how things should turn out may be devastated when reality deviates from that expectation. But disabled parents may be less likely to be surprised when they have to adjust, and less likely to blame themselves. In the decade-plus that I've been disabled, I've learned, through repeated disappointments, that I should expect problems. This attitude might seem pessimistic, but it can actually be protective. When one thing falls apart, I don't automatically assume that everything will. For example, in 2024, we had our second baby, this time through surrogacy. The birth was difficult. Our surrogate and our baby both experienced complications and almost didn't make it. But even in the most harrowing moments, I fought to maintain a sense of equilibrium. Disabled parents, like all parents, are flawed, but embracing imperfection may be one of the most valuable lessons a parent can learn. I once thought that with healthy eating, the right choices, and hard work, I could achieve an ideal life. But then, at 28, I became disabled. As I realized that I could not regain my old capacities despite doing absolutely everything in my power, my worldview started to shift. I confronted what my pursuit of perfection could—and couldn't—accomplish. Today, I'm less hard on myself for what others might see as early-parenting shortcomings: feeding my kids formula, taking a chaotic approach to their sleep schedule, leaving the TV on in the background too much. I can recognize my missteps as relatively minor. And I'm more willing to accept help as well. Before I met my partner and had a child, friends took me to the doctor, hung my shower curtains, and brought my trash to the curb. Having become accustomed to community support, asking for aid with a new baby didn't scare me. You don't have to be disabled to adopt this mindset—in fact, elements of it might be a balm for any parent. In some cases, this might mean not obsessing over the expensive stroller you can't afford and instead making do with the safe one passed down from a neighbor. In others, it might mean asking for more help at night. This vision of parenthood may seem less aspirational. But flexibility and compassion are vital when your body is sore from labor, no one is sleeping through the night, and your family dynamic has shifted beyond recognition. Once you learn to show yourself compassion, you may finally see, as I did, that you are giving your baby exactly what they need.
NBC Sports
09-04-2025
- Health
- NBC Sports
Winnipeg Jets prospect announced retirement because of medical condition
WINNIPEG, Manitoba — Chaz Lucius, a first-round draft choice of the Winnipeg Jets in 2021, announced his retirement from hockey on Tuesday after recently being diagnosed with Ehlers-Danlos syndrome. Lucius in a statement said EDS is 'a hereditary disorder that affects the connective tissue that stabilizes and supports the joints and organs throughout the body.' 'As I struggled with incurring and recovering from various joints injuries over the last several year, I thought I was just unlucky,' he said. 'With this diagnosis of EDS, I now realize that my body impacted by EDS could not handle the physical nature of playing hockey. Given this condition, my injury history, and the physical nature of hockey, I have been medically advised not to continue to play.' The 21-year-old from Lawrence, Kansas, had spent the last two-plus seasons with the Jets' AHL affiliate, the Manitoba Moose. Lucius had nine points (three goals, six assists) in 25 games for the Moose in 2024-25. He last played on Feb. 9. 'After much discussion and consultation with Chaz, his representatives, and medical professionals, the Winnipeg Jets Hockey Club fully supports his difficult decision to retire,' the Jets said in a statement. Lucius played one year of collegiate hockey at Minnesota and also played for the Western Hockey League's Portland Winterhawks in 2022-23. The 6-foot-2, 185-pound center also competed for the U.S. at the 2023 world junior championship, where the Americans won bronze.
