All articles tagged with #ehlers danlos syndrome
After a hysterectomy, the author experienced unexpected complications due to Ehlers-Danlos syndrome, including tearing her vaginal cuff multiple times, which prolonged her recovery and emotional distress. Despite setbacks, she emphasizes the importance of support from loved ones and healthcare providers, and finds hope in her ongoing healing process.
Halsey has shared another update about her health struggles, revealing ongoing medical issues without specifying the illness. Despite her challenges, she remains optimistic, planning a "rebirth" by age 30. She also announced she's working on a new album and released a new song, "The End," which reflects her experiences with her health journey.
Allison Tennyson, 34, has revealed her struggle with being allergic to semen and condoms, making sexual intimacy excruciating and uncomfortable due to a burning sensation caused by the contact with spermatozoon. Diagnosed with Ehlers-Danlos Syndrome and a blood clotting disorder, she also worries about the risks of pregnancy. Despite the challenges, she remains hopeful about the possibility of having a child in the future. Another woman, Chloe Lowery, also shares a similar rare semen allergy, leading to discomfort and adverse reactions during sexual encounters.
Allison Tennyson, 34, from Minneapolis, Minnesota, has a rare allergy to semen, causing extremely painful burns during sex due to her Ehlers-Danlos Syndrome. She is also allergic to condoms, making intimacy challenging. With concerns about having children, Allison and her partner are navigating the difficulties of her condition and its impact on their relationship and future family plans.
Ehlers-Danlos Syndrome (EDS) is a genetic disorder affecting connective tissues, with symptoms ranging from joint issues to internal organ complications. Diagnosis is often delayed, with patients waiting an average of 14 years to be diagnosed, and misdiagnosis is common. Despite challenges, patient advocacy and medical research are slowly increasing awareness and improving care for EDS, with specialized centers and peer support networks emerging. While there is no cure, patients like physician Alissa Zingman emphasize that EDS is survivable and treatable, and hope for continued progress in diagnosis and treatment.
Actress Selma Blair, who has been in remission from multiple sclerosis since 2021, shared a health update on Instagram, revealing that she experiences constant pain due to Ehlers-Danlos syndrome, a condition affecting connective tissues. She also discussed the ongoing challenges of living with MS and dystonia, expressing gratitude while acknowledging the difficulties she faces.
Actress Selma Blair opens up about her ongoing battles with multiple sclerosis and Ehlers-Danlos Syndrome, revealing that she is in constant pain and struggles with stiffness. Despite being in remission from MS, she continues to experience chronic pain and fatigue, expressing gratitude but also acknowledging the challenges she faces. Blair has become an advocate for those living with chronic illnesses and has shared her experiences in her memoir. She also discusses the impact of her health on her personal life, including the difficulties she faced after giving birth.
Actress Selma Blair shares a candid health update on social media, revealing that she is in constant pain due to the effects of multiple sclerosis and Ehlers-Danlos syndrome. Despite being in remission since 2021, she continues to struggle with stiffness and fatigue, and is due for another MRI and blood work. Blair remains positive but acknowledges the challenges she faces, expressing gratitude while also admitting to feeling sad about her limitations.
Stephanie Aston, a 33-year-old woman from New Zealand, has died from Ehlers-Danlos Syndrome (EDS), a rare genetic disorder affecting connective tissue. Aston had been dismissed by a doctor who claimed her illness was "all in her head." EDS is often referred to as an "invisible disease" as sufferers can appear healthy despite experiencing severe symptoms. Aston's death has shaken the EDS community, highlighting the challenges faced by those with rare and invisible illnesses. Advocates are calling for systemic change within the healthcare system to prevent similar tragedies.
Stephanie Aston, a 33-year-old woman from New Zealand, who was accused of faking symptoms of Ehlers-Danlos Syndrome (EDS), a debilitating genetic disorder, has passed away. Aston became an advocate for patients' rights after doctors dismissed her symptoms as mental illness. EDS weakens connective tissues and can cause various symptoms such as joint dislocations, easy bruising, and abnormal scar formation. Aston's case highlights the issue of misdiagnosis, particularly in women's health, and the need for improved medical research and understanding of gender differences in healthcare. Aston's advocacy work will be remembered by the EDS community.
Hanna Carlson, an 8-year-old girl from Gardiner, Maine, lives with chronic pain and joint pain caused by hypermobility syndrome. Her condition requires extra energy to keep her body moving properly. Hanna's family is currently seeking a diagnosis for Ehlers-Danlos syndrome, a related disorder. Despite her health challenges, Hanna remains active and participates in a congenital myopathy research study at Boston Children's Hospital. Recently, she and her family attended Family Advocacy Day in Washington, D.C., to advocate for children's hospitals. Hanna's condition is managed through therapy and strengthening exercises, and she hopes to join the robotics club at school in the fall.
The author shares their experience with hypermobility and being diagnosed with Ehlers-Danlos syndrome (EDS), a connective tissue disorder. They explain how trail running has been beneficial for managing their pain and strengthening their stabilizing muscles. The article highlights the importance of exercise for individuals with hypermobility and provides advice on seeking information and finding knowledgeable physical therapists.
Emily Balfour, a 25-year-old woman from London, is raising funds for a stem cell treatment that could prevent her brain from slipping down her spine and causing paralysis. Balfour suffered an ice skating injury at 14, which destabilized her spine, and was later diagnosed with Ehlers-Danlos syndrome. She now has a Chiari malformation and craniocervical instability, causing extreme pain, fatigue, paralysis, and loss of vision. The stem cell treatment, called a PICL, involves injecting stem cells into the spine through the back of the mouth, and Balfour hopes it will stabilize her skull and prevent further damage to her brainstem.
A medical student who contracted COVID-19 in January 2020 developed postural orthostatic tachycardia syndrome (POTS), a nervous system disorder that causes dizziness, fainting, and exhaustion when standing for a long time. After being dismissed by doctors who blamed anxiety, she did her own research and found that her symptoms matched those of long COVID and POTS. She was eventually diagnosed with both conditions and Ehlers-Danlos syndrome, a connective tissue disorder that may predispose people to POTS. She urges patients to be their own advocates and not give up if doctors don't take them seriously.
Tulane University researchers have discovered a possible genetic cause for hypermobility and related disorders, such as Ehlers-Danlos syndrome, linking it to a deficiency of folate caused by a variation of the MTHFR gene. The discovery could help doctors diagnose hypermobility and hypermobile EDS more accurately by looking for elevated folate levels in blood tests and the MTHFR genetic variant. An existing FDA-approved treatment, methylated folate, has shown promise in improving patients’ symptoms.