LEMS Advocacy: Why It’s Important to the Patient Community
As with many rare diseases, Lambert-Eaton Myasthenic Syndrome (LEMS) is unknown to many people around the world. But for those affected by LEMS, its effects are often a normal part of everyday life. Advocacy for LEMS brings much-needed awareness to the condition and bridges the gap between the LEMS community and the general public, allowing more opportunities for support, research, and treatment advancements.
What Does Advocacy Mean?
Advocacy generally means to take actions to support or defend a cause. In dealing with rare diseases like LEMS, there are two main types: self-advocacy and community advocacy. Self-advocacy refers to an individual’s ability to communicate their own experiences, desires, needs, and rights. Someone who self-advocates well can effectively ask for what they want and tell others about their thoughts and feelings. They usually do so:
- With their physicians
- Through partnerships with healthcare systems
- In community resources
- In their workplace
- With educational institutions
Community advocacy refers to working with others collectively in groups, especially those with shared experiences, positions, or values, to advocate about specific issues. Such groups aim to influence public opinion and policies and usually do so through:
- Patient organizations
- State legislature
- The Food and Drug Administration (FDA)
When it comes to LEMS, both advocacy types are beneficial in bringing awareness and support to patient communities. Typical ways of advocating for LEMS include awareness building, community education, and patient representation. Usually, patient advocacy organizations (PAOs) are the most notable advocates for the LEMS community. They play a major role in helping to ensure that LEMS patients and their families have proper representation and support.
What Is a Patient Advocacy Organization?
PAOs are non-profit organizations that serve as a support system for patient communities and bring these communities’ voices to key stakeholders. These organizations seek to help those with diseases like LEMS, in addition to their families, by taking actions to address needs in the patient community, such as through clinical trials, education, and connecting patients with qualified physicians. They work with stakeholders such as researchers, pharmaceutical companies, and government entities to create lasting changes.
For LEMS patients, having a support system can be empowering and helpful in navigating issues they may face. PAOs are known to bring patients together to ensure that they are a part of a supportive and interactive community. There are several PAOs dedicated to doing so while also providing guidance on how to live with LEMS and other rare diseases. Some of these include:
- Global Genes
- National Organization for Rare Disorders
- The Myasthenia Gravis Foundation of America (MGFA)
- The Muscular Dystrophy Association (MDA)
LEMS Aware: A Reliable Resource
For those affected by LEMS, having a resource to refer to can be the difference-maker in learning more about the condition and improving quality of life. LEMS Aware provides LEMS patients the opportunity to further their knowledge of LEMS through educational content, in addition to providing ways for them to discover and learn more about the various patient support groups that can help them. LEMS Aware also helps patients connect with patient mentors and qualified physicians, and by signing up with LEMS Aware, patients receive updates about emerging LEMS news and information involving treatment and other resources.