Crohn's & Colitis Foundation’s Post

In recognition of Myasthenia Gravis Awareness Month this June, we are dedicated to shedding light on this challenging condition. Myasthenia Gravis affects between 140 and 361 individuals per million globally and approximately 1,500 individuals in the GCC region (Salari et al., 2021). This chronic autoimmune neuromuscular disease leads to muscle weakness, significantly impacting patients’ daily activities. In severe cases, it can affect essential functions, including the ability to breathe normally. An estimated 15% to 20% of MG patients experience myasthenic crises during their lifetime, with women being affected twice as often as men (Huang et al., 2021). Furthermore, nearly one-fifth of patients admitted for myasthenic crises require ongoing care through rehabilitation centers (Köhler et al., 2011). By raising awareness and understanding of Myasthenia Gravis, we can ensure that those affected receive the support and treatment they need. Join us this month in spreading the word and making a difference. References: Salari N, et al. Global prevalence of Myasthenia Gravis and the effect of geographic location and measurement type: a comprehensive systematic review and meta-analysis. J Transl Med. 2021 Dec;19(1):516. Huang Y, et al. Epidemiological and clinical characteristics of patients with Myasthenia Gravis in China: a systematic review. Front Neurol. 2021;12:767961. Köhler W, et al. Myasthenic crisis: current strategies and new perspectives. J Clin Apheresis. 2011;26(6):347–55.

This June, in light of Myasthenia Gravis Awareness Month, we shed light on a chronic autoimmune neuromuscular disease that, like many other rare diseases, suffers from a lack of broader understanding regarding the challenges it presents, despite affecting over 700,000 people worldwide and 1,500 people in the GCC. (Chen et al., 2020) Collaborating with the MG community is central to our commitment to driving meaningful change and improving treatment outcomes for those living with this rare disease. This month, we're joining the call to transform awareness into action during #MGAwarenessMonth, emphasizing the importance of awareness and partnership to enhance treatment and care for everyone affected by this rare disease. #MGAwarenessMonth #MyastheniaGravis Reference: Chen J, Tian DC, Zhang C, Li Z, Zhao X, Mao Z, et al. Myasthenia gravis: A disease with extreme heterogeneity. Lancet Reg Health West Pac. 2020 Nov 27; 5:100063.

As we approach Rare Disease Month this February, let's start a meaningful conversation about myasthenia gravis. We invite you to share your stories or insights in the comments below to enrich our understanding and support for those affected by MG. Let's unite to spotlight MG and begin Rare Disease Month with shared stories and insights. #RareDiseaseMonth #MyastheniaGravis #MGStrong

Today is the first day in my initiative to raise awareness for Rare Disease Day, coming up on the 29th February. I will post something about one rare disease every day during February. Mostly, these will be personal stories from people living with a rare disease. The stories that are coming, will truly humble you. Amazing people with resilience beyond my comprehension! But...today is a bit different. Today is von Willebrand awareness day, so that seemed like the obvious place to start this initiative. There is a great initiative being run by the European Haemophilia Consortium. I have written an introduction to VWD, and the reasons for its under diagnosis. Maybe some of the symptoms will resonate with someone, as around 1% of the population have this condition, and many will not have been yet diagnosed. There are some useful links at the bottom of the article, where you can find more information. #rarediseaseawareness #bleedingdisorders

This #HSAwarenessWeek we’re bringing attention to #HidradenitisSuppurativa (#HS)—a disease that may impact as many as 1 in every 100 people worldwide. This week and always, join us in supporting the HS community by learning more about this disease and its impact. By increasing conversations and awareness, we can all help people living with HS get to diagnosis faster. Learn more: https://lnkd.in/erSdw25R

April is Parkinson's Awareness Month in the US. Let's spread awareness about the early signs, therapies, and resources available for those affected by Parkinson’s. Here are answers to common questions about the disease. Share to help raise awareness! #ParkinsonsAwareness #EndParkinsons Parkinson’s Awareness: Essentials on the Disease, and What You Can Do https://bit.ly/3Q7jwun

April is Parkinson's Awareness Month in the US. Let's spread awareness about the early signs, therapies, and resources available for those affected by Parkinson’s. Here are answers to common questions about the disease. Share to help raise awareness! #ParkinsonsAwareness #EndParkinsons Parkinson’s Awareness: Essentials on the Disease, and What You Can Do https://bit.ly/3Q7jwun

Tomorrow is #RareDiseaseDay! At Prothena, we are deeply committed to addressing the challenges of rare diseases, including AL #amyloidosis. We recognize the inherent difficulty in rare disease management which drives our purpose every day to know that our efforts can make a meaningful impact on people's lives. Hear more from Donna-Lee Destouche, M.Sc., CCRP on how she embraces the challenge with a sense of purpose and determination: https://bit.ly/49ADPb4 #ProthenaProud

Up next in our Arthritis-Appropriate, Evidence-Based Intervention (AAEBI) spotlight is the Chronic Disease Self-Management Program (CDSMP)! The CDSMP is designed to help individuals learn how to best deal with problems associated with chronic disease. This program is offered in many forms, including as a mailed toolkit, called the Toolkit for Active Living with Chronic Conditions. Check out this program and others at https://lnkd.in/gr9TqGqg #osteoarthritis #StandUp2OA

"From when a patient first experiences unexplained symptoms to their ten-year anniversary of effective treatment, it is UDNF’s goal to provide the resources, community, and research they need to live their best lives." April 29 is Undiagnosed Disease Day. We reached out to the Undiagnosed Diseases Network Foundation (UDNF) to share how they help those seeking a diagnosis and spoke to Gerald Sweeney who serves on their board of directors. Read the full article here: https://lnkd.in/eMGTtMEt #UDNF #RareDisease #CareAboutRare #UndiagnosedDay