I’ve spent much of this year traveling around the country visiting with support groups to give some civics lessons for cancer advocates. But those visits, along with some of the events I have been lucky enough to represent the IMF, have taught me some things about the myeloma community. Here’s a top ten list of thoughts that struck me during the year:
- Through your myeloma experience, you end up meeting the best friends you wish you had never met. That’s just one of the many poignant, bittersweet, and just plain bitter experiences that comes with the understanding of myeloma.
- Your connection to a myeloma diagnosis makes you a part of a new community. Some of you find this out through your support group meetings, deeper relationships with the people who matter in your lives, and connections with others through the IMF-hosted myeloma list serve.
- Myeloma is by no means rare. It may be uncommon, as board member Mike Scott often reminds me, but that does not mean it is rare. Myeloma’s share of the 1% of all new cancer diagnoses in the U.S. adds up to about 15,000 people annually. Myeloma is everywhere.
- Knowledge does make a difference. In my experience, the more patients and their support network know and understand their myeloma, the healthier they seem to be. After visiting this year with more than a dozen myeloma support groups, I have concluded that knowledge and support shared through support groups help myeloma patients by providing information leading to the best possible quality of life.
- More support groups are better. Today, the IMF lists more than 85 myeloma support groups worldwide. Before Brian Novis and Brian Durie got together more than 12 years ago to found the IMF, there were none. The more I see, the more I am convinced that support groups are one of the best changes the myeloma community has experienced since the IMF’s founding.
- Reaching out can be therapeutic. It doesn’t matter if your group has 5 or 50 attendees. The important thing is to get together, share, and advise. I was so impressed with the level of support, regardless of the size of the group, at every meeting I attended.
- Support group leaders need support too. Support group leaders vary, but their burdens can become great. I would recommend attending the annual IMF Support Group Leaders Retreat to every myeloma support group leader. If the leader is unable to attend, it is important to send a representative from your group.
- The science is changing; genomics may have the maps we need. As was outlined in the June 2002 issue of Myeloma Today, the future of cancer treatment will be targeted and at the molecular level. The key, rather than use chemotherapies, is to identify the pathways and targets that cause our cancers, regardless of where they may be.
- Patient advocacy and public advocacy matter. Patients need advocates – sometimes themselves – to make their needs known and understood. In much the same way, we, as groups of myeloma and cancer communities, need to be just as forceful in making our needs and hopes known to policy makers. If we all spend only 20 minutes to 2 hours per year on educating our public officials about the issues that affect us, we can make a great difference.
- Coalitions achieve more. Myeloma patients need to work together with each other to be effective. But they also need to see public advocacy as important a task as patient advocacy. Therefore, if we are serious about more research funding for myeloma, we need to support the One Voice Against Cancer agenda. If we are serious about getting oral cancer drugs reimbursed through Medicare, we need to work with the largest groups that support our goals. s
Note: For information about myeloma support groups, visit http://supportgroups.myeloma.org.
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