Part # 4 Share Your Community Awareness and Impact of MG

by MANLEY LAVENDER

Throughout my Myasthenia Gravis (MG) journey, I have learned about the MG patient, caregiver and doctor community in Canada and throughout the world. Like any other rare disease, we are learning about each other's community. As patients and caregivers develop an understanding of their own disease, we also begin to understand the benefits of leveraging the communities of each rare disease.

Unfortunately, one of the challenges patients and caregivers face is knowing how to reach and communicate with each other. Within the MG community in North America, we have several nonprofit organizations which offer help. They include Muscular Dystrophy of Canada; MGFA which is MG Foundation of America; MGA which is MG of America; and C.O.R.D. which is Canadian Organization for Rare Diseases. We also have grassroots organizations like MGSC which is MG Society of Canada. These all offer varying types of supports, like virtual workshops, seminars, podcasts, and in some cases in person meetings.

Another source of information should come from your specialist and/or general practitioner, as within there medical network they would have access to valuable resources. The different types of resources may include: mobility aids, mental health, nutrition, personal in-home supports, PSWs, and friendly visits from volunteers from agencies like community care.

Besides the organizations mentioned above, we also must expand our awareness of MG into other areas of our community, such as with general practitioners, physiotherapists, nutritionist, and other medical professionals, who are all needed at some point during our journey. Furthermore, our business community and community advocates also need to become more involved and aware of the needs of patients and caregivers.

As MG patients become more stable with the access of your medical team, medication plan, physiotherapist, and nutritionist, the opportunity of returning to work or establishing new opportunities of financial sustainability becomes more realistic. This, unfortunately, for many, becomes another hurdle or challenge which must be overcome. As MG is considered a rare disease, we do not present to the public with obvious medical challenges. Unless you ask us to walk, talk, speak, eat or see for extended periods of time. We must continue to educate and advocate for ourselves and others, to our present and future employers. Many of us, during our pre-diagnosis or diagnose stages, lost our employment and access to community stakeholders which we relied on. So, we are left to rebuild, rebrand, and rethink the new version of ourselves. For many, this is a daunting and overwhelming task.

The community agencies need to get better at supporting the rare disease community which are comprised of adults who are in the prime of their lives, working, raising a family, and contributing to their community. Many adults, who are diagnosed with MG, still can offer valuable skills and have considerable years of experience which businesses should tap into.

Even though we have employment agencies which offer services to people with identified disabilities, we must still have a plan, and pursue the various agencies, such as: META, ODEN, VPI and the YMCA. These agencies can be found throughout Ontario, specifically in Durham region and the surrounding communities.

There is still a gap between medical support (specialist, General practitioner and others) linking the patient and caregiver to community advocacy/employer groups. In order to narrow the learning gap, we must continue to share our knowledge to as many people who will listen and to those who can make a difference.