Know Rare

🎙️NOW STREAMING: Rare Insights A new podcast series focusing on the future of potential rare disease treatments. 🧬 This series promises to delve deep into the cutting-edge research and innovative therapies that are shaping the landscape of rare diseases. Industry and organizational leaders share the latest advancements, providing expert perspectives and valuable knowledge. These thought leaders will discuss breakthroughs and the impact these innovations may have on patients’ lives and the healthcare industry as a whole. Hosted by Taren Grom, co-founder and former media executive of PharmaVoice, this podcast brings unmatched expertise and insight to the conversation. Grom’s experience and passion for the subject will guide you through each episode, ensuring a rich and informative experience. ✨LISTEN NOW✨ wherever you stream your podcasts! For more information visit: https://lnkd.in/ggxKiXws - #medicalresearch #raredisease #rarediseaseawareness #clinicaltrials #clinicaltrial #healthcareindustry #clinicalresearch #KnowRare #RareInsightsPodcast

Pain is a complex journey that goes beyond just physical symptoms.     Researchers have identified five personas that many of us can relate to during our experiences with chronic pain. From the determined Diagnosis Detectives to the resilient Supportive Survivors, each persona reflects unique challenges and strengths.    Which one resonates with you? 💭    Share your story in the comments and let’s support each other on this journey.👇    -    #MMN #multifocalmotorneuropathy #painmanagement #painwarrior #spooniewarrior #chronicpainawareness #spooniestrong #butyoudontlooksick #spooniesupport #spoonielife #chronicillnessawareness #KnowRare

The rare experience changes us.💙    How we respond to our challenges becomes its own reward.     This doesn’t mean we need to show unhealthy levels of grit, just that we should be open to how our character can evolve in response to adversity.    I recently watched a video by Duke women’s basketball coach (@dukewbb) Kara Lawson (@karalawson), who said this to her team: “We wait for stuff to get easier. It will never get easier. What happens is you handle hard better.”    This is great advice in general, but especially when we can’t change our circumstances. This doesn’t mean that if you struggle to handle your challenges well, you’ve failed in any way, nor does it mean mercilessly berating yourself for your shortcomings.     This isn’t meant to be toxic.     Rather, it leaves open the possibility that hard times can lead to personal growth.    -    #raredisease #rarediseaseawareness #chronicillness #chronicillnessawareness #spoonie #spooniestrong #spooniesupport #spoonies #KnowRare

Are the doctors dreaming when they tell us to hydrate, rest, avoid stress, stay active, and keep regular check-ups? 📋    Do they understand LIFE is unavoidable?     And when they say rest and stay active, what exactly do they mean?    When living with sickle cell disease or other conditions that benefit from behavior-modification, it's a burden on us, the patients and caregivers, to find the balance between life responsibilities and caring for our bodies.     Wouldn't it be nice if spa days were the next pharmaceutical breakthrough!? 💭    -    #sicklecellawareness #sicklecellawareness #sicklecelldisease #raredisease #rarediseaseawareness #rarediseaseadvocacy #spoonies #spooniesupport #spoonie #KnowRare

We are all people before we are patients. 💙     The way we speak shapes the world. Using person-first language isn't just a choice; it's a powerful tool that transforms experiences and fosters empathy.    How can you weave person-centric language into your conversations? 💭     By prioritizing the individual over the illness, we can uplift voices, and validate experiences.    -    #raredisease #rarediseaseawareness #chronicillness #chronicillnessawareness #spoonie #spooniestrong #spooniesupport #spoonies #KnowRare 

Share your Rare: Meet Taylor 💙 After giving birth to her first baby, Taylor Coffman experienced the precipitous onset of a rare disease called Atypical Hemolytic Uremic Syndrome or Pregnancy-associated Thrombotic Microangiopathy. It caused a cascade of life-threatening issues including kidney failure, heart failure, sepsis, pneumonia, uremia, hypoxia, and clots all over her body including her kidneys, heart, lungs, and pelvis. After five weeks in and out of the ICU on a ventilator three times, Taylor survived and came home to her daughter. Coming home wasn’t simple, involving a tsunami of doctor appointments, physically unable to walk or pick up her child, and hours of dialysis every other day. Two years later, she’s stable and an active mother. Taylor is working and managing her rare chronic disease with regular infusions. During this time, she learned a great deal about healing, getting the care you need, understanding the body, and how to parent under incredibly challenging circumstances. Taylor started a Substack called Rare Disease Girl and an article she published in February in the Huffington Post on tips for patient advocacy went viral to number 1 in Apple News. While her experience is rare, it resonates with all. Taylor says, “Being a patient is part of the human experience and my goal is to help everyone to feel empowered to get the best care possible.” #rarediseaseawareness #raredisease #rarediseasewarrior #spoonies #spooniestrong #spooniesupport #rarediseasewarrior #KnowRare

Drug recalls in sickle cell disease highlight the fragile landscape of treatment options for patients. These recalls can create significant disruptions in care, leaving patients feeling vulnerable and without trusted alternatives.    Historically, sickle cell treatment has relied on a limited number of therapies, and the withdrawal of any option can intensify the urgency for new advancements. Patients often find themselves grappling with uncertainty about their health and treatment plans, particularly when effective medications are abruptly removed from the market.    Moreover, these recalls underscore the need for robust research and development in the field. While progress has been made, the reality is that existing treatments often fall short of addressing the complex needs of patients. The emphasis on finding safer, more effective therapies and ultimately a cure is more critical than ever.    As we move forward, it's essential to advocate for comprehensive research and funding that prioritizes the unique challenges faced by those living with sickle cell disease. Ensuring that patients have access to reliable and effective treatments should be at the forefront of our efforts in healthcare.    -    #SickleCellAwareness #KnowYourGenotype #SickleCellAwareness #GenotypeEducation #KnowledgeIsPower #sicklecelldisease #raredisease #rarediseaseawareness #rarediseaseadvocacy #KnowRare

Perceptions of Pain: Research Shows It’s Personal A recent analysis of several research studies on people’s experiences of living with chronic pain revealed many common issues, such as feeling as if: - life is limited and lacking - you are struggling against your body - you are on a quest for a “Holy Grail” to help with the pain - you’ve lost people’s confidence and belief - you’re constantly trying to keep up appearances - you feel the need to be treated with dignity More at https://lnkd.in/e-9mRn4h Source: Know Rare #chronicpain #painsomnia #livingrare #rarediseases #sicklecelldisease #Fibromyalgia

Meet Edward Gent, a 27-year-old from the UK living with MMN.     For a while. he had an unusual limp and a lifeless middle finger in his right hand. After a fall he experienced while commuting to work one day, he was misdiagnosed with a snapped tendon, he endured months of discomfort, waiting for surgery and recovery.    However, after numerous tests, including nerve conduction studies and the looming possibility of ALS, he was finally diagnosed with Multifocal Motor Neuropathy (MMN) in 2017. This diagnosis led to regular IVIg infusions to manage his condition. Despite the challenges, Edward found strength in confronting his illness and embracing a holistic approach to his health and well-being.    Since his diagnosis, Edward has become a qualified sports nutritionist and created an app called Health Haven, which connects people dealing with MMN and other health challenges to health coaches.     Through this app and his advocacy work with the GBS

Are you just done? 💭 Sometimes enough is enough.    The weight of constant advocacy, navigating complex medical systems, and managing daily challenges can lead to profound burnout. The journey often requires you to be the expert, the advocate, and the emotional support, leaving little room for self-care or respite.    It's okay to acknowledge the toll this takes. The feelings of uncertainty, discomfort, and exhaustion can become overwhelming, leading many to say: "I've just had enough."    Your struggles are real and deserve recognition. It's crucial to prioritize your well-being and seek support. Remember, you are not alone.💙    -    #raredisease #rarediseaseawareness #rarediseasewarrior #spoonies #spooniesupport #mentalhealthmoment #mentalhealthmatters #mentalhealthawareness #KnowRare