![\"\"](\"https:\/\/rarediseases.org\/wp-content\/uploads\/2024\/02\/TB2023-1-201x300.jpeg\")
<\/p>\nBy Thomas B.<\/p>\n
<\/p>\n
I’m a patient living with <\/span>Myasthenia Gravis<\/span><\/a>, a rare neuromuscular autoimmune disease that affects the voluntary muscles. The immune system kills the chemical receptors in our muscles such that they do not receive the signal for the muscle to function properly.<\/span><\/p>\n The impact on my life has been all-encompassing with overwhelming fatigue, inability to use my legs reliably, double vision and drooping eyelids, along with my voice being altered and brain fog. Yet, I look fine from the outside. As a result of this diagnosis and its symptoms, I had to resign from my role as head of global sales for a life science firm.<\/span><\/p>\n On the positive side, I have used my background in technology and science to become an advocate for the application of technologies from a patient point of view. I asked the question, \u201cHow can we track our symptoms in real time and report the data back to our health care providers and biotech companies?\u201d Rather than waiting to speak to our neurologist every three to six months and fill out a form, they can have the actual data as it happens and develop an intervention program which could include precision medicine approaches. My vision is to provide real-time therapies as patients experience the impact of the disease.<\/span>\u00a0<\/span><\/p>\n Rare Disease Day<\/span><\/a> is an opportunity to educate those outside of the rare disease community on the devastating results of diseases that many have never heard of. It is important that everyone is informed about these disorders, over 10,000, only 5% of which have FDA approved therapies here in the United States. The only way we can address these diseases is with money, dedicated research, and applying new and existing thinking to find ways to treat the untreatable.<\/span><\/p>\n It wasn\u2019t too long ago in terms of science and research that Myasthenia Gravis (MG) was a death sentence. However, today there are several FDA-approved therapies to treat MG and provide a higher quality of life. I’m grateful for the scientific research community, which I used to work with as a consulting firm. Now, they are the ones that are helping solve incredibly complex problems so people like me can continue to pursue life!<\/span>\u00a0<\/span><\/p>\n Although we may look alright on the outside, the rare disease community faces struggles every day, both patients and caregivers. Our episodes are unexpected, and events that we cannot avoid, such as attending funeral services for a close relative or needing to travel for work, take all day and require much preparation.<\/span><\/p>\n You can <\/span>support the rare disease community on Rare Disease Day<\/span><\/a> through your encouragement and attention. Support patients and caregivers through your efforts to really understand what they are going through. <\/span>For every one person who is on social media telling their story, there are thousands who live in silence. Be a voice for them and help tell their story.<\/span><\/b>\u00a0<\/span><\/p>\n \u00a0<\/span><\/p>\n Feeling inspired? <\/span><\/i>Click here<\/span><\/i><\/a> to read more stories and learn how you can <\/span><\/i>get involved this Rare Disease Day<\/span><\/i>,<\/span> including by <\/span><\/i>making a donation to NORD today<\/span><\/i><\/a>.<\/span><\/i>\u00a0<\/span><\/p>\n Thomas shared his story to encourage other rare disease community members to do the same! <\/span><\/i>Share your voice and your story with NORD<\/span><\/i><\/a> for the opportunity to be featured in a future campaign.<\/span><\/i>\u00a0<\/span><\/p>\n NORD offers several Patient Assistance Programs for people seeking to access or pay for medical treatment for Myasthenia Gravis, <\/span><\/i>which can be found here<\/span><\/i><\/a>.<\/span><\/i>\u00a0<\/span><\/p>\n Are you a clinician looking to expand your knowledge of MG and earn Continuing Medical Education (CME) credits? <\/span><\/i>Take NORD’s free CME course on Generalized Myasthenia Gravis.<\/span><\/i><\/a>\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":" By Thomas B. I’m a patient living with Myasthenia Gravis, a rare neuromuscular autoimmune disease that affects the voluntary muscles. The immune system kills the chemical receptors in our muscles … <\/p>\n