Find out why Carlos and his family will be at the MG Walk in New York on September 21. "Invisible illnesses" like myasthenia gravis are not invisible to those living with them. Take a moment to read this story. 💙
Global Account Manager | Turning Client Needs into Actionable Solutions | Focus on Driving Strategic Growth and Exceeding Client Expectations | Makes Things Happen
Hello, It has been quite a while since I have been on here, but now is as good a time as any to dust off the cobwebs. I wanted to take a moment to share a deeply personal journey that has profoundly impacted my family over the past two years and changed our lives forever. My father, Juan Carlos Ortiz, has been courageously battling a rare autoimmune disease that affects less than 0.02% of the population: Generalized Myasthenia Gravis (gMG). This condition causes severe muscle weakness, affecting everyday activities such as speaking, swallowing, and breathing. MG is an "invisible" chronic disease where patients may appear fine but struggle with daily activities. Unfortunately, in rare cases, the condition has been proven fatal. Roughly 15-20% of individuals with MG will experience at least one myasthenic acute crisis at some point in their lives. My dad has had two myasthenic crises this year, resulting in two separate 6-night stays in the ICU. I recently attended my first HealthFair, which was hosted by the Myasthenia Gravis Foundation of America, Inc. this past May. It was the first time I didn't feel alone in the battle alongside my Dad. One of the speakers, Aimee Z., inspired me to begin my advocacy journey. Not many people are aware of Myasthenia Gravis, let alone what my family and I have been going through for the past two years. As my father's advocate, I have assumed power of attorney and healthcare proxy. I have navigated complex medical decisions to ensure he receives the best possible care. I now have a mission beyond personal caregiving; it has become my life's purpose to raise awareness about MG. I want to shine a light on its impact on my dad, our family, and the broader MG community. Raising awareness requires community support. Whether through sharing our story or joining/donating to our team, every action counts in making a difference for those affected by MG. On September 21st, our family will participate in a fundraising walk for the Myasthenia Gravis Foundation of America, Inc. (MGFA). This event aims to support critical research, education, and patient resources, essential for improving outcomes and finding a cure for MG. I understand that asking for your time to read the article I wrote below about my Dad is a big request, but I would appreciate your support in helping to raise awareness. You can make a difference by sharing this article or by joining and donating to our team. You can find my team page linked below. Juan Carlos Ortiz's Myasthenia Gravis Story: https://lnkd.in/gMqrAJN4 Team Page for Donations: https://lnkd.in/gRqEU3-q Together, we can bring much-needed attention to this rare disease and provide hope to individuals and families navigating similar challenges. If you or someone you know is struggling with MG, I am here to offer support in any way I can.