Rare Disease Advisor’s Post

January is #GlaucomaAwarenessMonth. Glaucoma has no early symptoms, which is why it is vital to get regular eye exams. Learn more about glaucoma, its risk factors, and what you can do to take care of your eyes. #glaucoma #eyehealth #NCSH

Embracing Rare Disease Day: My Journey with Charcot-Marie-Tooth On this Rare Disease Day, I reflect on my journey with Charcot-Marie-Tooth (CMT), a rare genetic disorder affecting only 1 in 2,500 people worldwide. CMT gradually erodes muscle tissue and impairs movement and sensation, impacting every aspect of my life. Simple tasks like walking, buttoning a shirt, or gripping objects become challenges, reminding me of CMT's constant presence as each step carries the weight of uncertainty. Yet, amidst the struggle, there's resilience. Every day is a delicate dance between resilience and adaptation. I've learned to embrace assistive devices as extensions of myself, transforming limitations into opportunities for innovation. Yet, the emotional toll is undeniable. CMT has cultivated empathy, fostering connections with others navigating similar journeys. It's ignited a passion for advocacy, amplifying the voices of those whose struggles often go unheard. In the professional sphere, CMT underscores the importance of accessibility and inclusivity. It's a reminder that diversity extends beyond visible differences, encompassing a spectrum of abilities and experiences. As Rare Disease Day unfolds, I'm reminded that strength isn't defined by the absence of struggle but rather by the resilience forged in its wake. Charcot-Marie-Tooth disease may shape my journey, but it does not define my spirit. Today, and every day, I stand alongside fellow warriors, united in our quest for awareness, understanding, and hope. #rarediseaseday #cmta #charcotmarietoothdisease #rarediseaseawareness #myjourney #oneofakind #disabilityinclusion #disabilityawareness

From supporting our structures to influencing flexibility and stability, healthy fascia is crucial for optimal function. ✅ But what happens when trauma or inflammation tightens and restricts our fascia? Read our latest blog post (link in bio) to understand the transformative power of Fascial Stretch Therapy (FST) and how it can release tension, improve mobility, and enhance your daily activities. 🏋️♀️ Don't let fascial restrictions hold you back! https://lnkd.in/gThaxghr

Today is the start of Trauma Awareness Month, and it's a crucial time to highlight the urgent need for expanded access to blood products before a patient reaches the hospital. Did you know that a blood transfusion immediately following trauma can significantly increase the chances of saving a life? Studies have shown that any delay in accessing blood can lead to increased odds of mortality. This is why we need to break down the barriers preventing pre-hospital blood transfusions. Your voice can make a difference. Join us in urging your Members of Congress to take action and help save lives by expanding access to pre-hospital blood transfusions. Together, let's make a meaningful impact this Trauma Awareness Month: https://bit.ly/42XT2PZ #TakeAction #TraumaAwarenessMonth #BloodTransfusion #SaveLives

Standing Strong Against Marfan Syndrome: This article shares the incredible journey of a father and son tackling Marfan syndrome, a rare genetic challenge. Their honest story about the highs and lows, and how they supported each other, is truly moving. It's a reminder of the strength of family bonds. Let's applaud their resilience! 🙌 #MarfanSyndrome #FamilySupport #InspiringJourney

During my usual learning escapades, On the management of Early Diagnosis of Cancer for Primary Healthcare Workers, I have constantly encountered BPSS as an integral part of disease management. We have to agree that, forthrightly, in palliative and supportive care, be it in Chronic disease management or end-stage disease management, we must, at all cost, adopt this modality; the BPSS-Biopsychosociospiritual model. What do we mean; Let's dive. The biopsychosocial-spiritual model is a holistic approach to understanding and treating health and illness. It takes into account biological, psychological, social, and spiritual factors that contribute to an individual's well-being. This model recognizes that health is not merely the absence of disease but involves multiple dimensions that interact and influence each other. Enjoy your week.

If not now, when? The American Heart Association turns 100 day. There are so many ways to celebrate and honor this momentous day: 🤚Learn Hands-Only CPR. #NationOfLifesavers ❤️ Sponsor trainings for your employees, field staff, partners. 🏢Embrace a community’s cardiovascular and stroke health through #corporatesponsorship. 👔 Build a coalition of powerhouse business leaders through Heart of Los Angeles #boardservice ❤️ Inspire passionate consumers by aligning with their values. #causemarketing The first 100 years were remarkable. The next 100 is nothing short of a #moonshot. #causemarketing #nonprofitleadership

Stress is a normal part of life. The key is to learn how to manage it. Unmanaged stress can increase the risk factor for heart disease. You can learn proven techniques to help calm your body and mind. Join our 8-week MBSR program led by a Stanford Cardiac Psychologist. Next session starts on January 19. Learn more about stress management and the upcoming program here: https://lnkd.in/gMa5wvz9

Seizures Identified as Potential Cause of Sudden Infant Death Syndrome Read the article here - https://lnkd.in/epRkrzqb #ForensicPathology #SIDSandSUDC #SUDCResearch #ForensicMedicine

Leaky gut is one of the most mysterious ailments to diagnose and treat which is why it’s important to choose a doctor who specializes in identifying and treating this condition. In many cases, leaky gut syndrome is the root cause of many problematic conditions. ➡️ learn more about leaky gut syndrome - https://bit.ly/3tSuEgT