Lots of people with gMG find it helpful to have different kinds of support. Anything that can help you manage your energy levels can help your overall well-being.
Everyone’s different and you may not feel that you need much help, but even occasional extra support can make a big difference. Simply knowing you can ask for help can be reassuring too. It’s worth bearing in mind that your needs may change over time, so it’s a good idea to have a support network in place in case you need to tap into it at some point. Your healthcare team is part of your support network too.
Why can it be hard to ask family, housemates, and friends for help?
There are lots of reasons you may find it difficult to ask those closest to you for help. You might not want to burden them or you may worry that it could change the relationship you have with them – especially with a partner.
Why can it be hard to ask work colleagues for help?
It can be hard to tell co-workers about a long-term condition because you might be worried you could be seen differently and that it could affect your career or you might not want to think about gMG while at work.
Find inspiration and support from the gMG community
Connect with others who may share your story and relate to your experiences. Check out these organizations and advocacy groups in the gMG community.
General Disclaimer: The following information is provided for educational and support purposes. UCB does not endorse any specific organization or the content on their respective websites. This is not a complete list. Be sure to look for local support groups that may be in your area.
- Caregiver Action Network (CAN) serves a broad spectrum of family caregivers.
caregiveraction.org - Conquer MG supports, informs, advocates, and funds research. Our goal is to provide programs and services that have a positive, direct impact on MG patients and their families.
myastheniagravis.org - Myasthenia Gravis Foundation of America (MGFA) is a leading health-based non-profit committed to finding a cure and better treatments for people living with Myasthenia Gravis.
myasthenia.org - Myasthenia Gravis Holistic Society aims to empower Myasthenia Gravis patients and their care teams through outreach, awareness, community groups, and support resources.
mgholisticsociety.org - The MG Friends Program is a peer-to-peer phone support program that helps ensure that you have the information you need to face this diagnosis and improve your quality of life.
myasthenia.org/Living-With-MG/Find-Support/MG-Friends-Program - The Myasthenia Gravis Association serves those living with MG, their family and friends in their communities. For over 60 years, the Myasthenia Gravis Association has been devoted to their mission, to increase public awareness and to provide MG-specific educational opportunities.
mgakc.org - The National Alliance for Caregiving (NAC) is a non-profit coalition of national organizations who share a vision of a society that values, supports, and empowers family caregivers to thrive at home, work, and life.
caregiving.org - Today’s Caregiver is the first national magazine dedicated to caregivers that’s a leading provider of information, support, and guidance for family and professional caregivers.
caregiver.com
Be sure to look for local support groups that may be in your area. If you need help finding them, reach out to us at MGAdvocacy@ucb.com.