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Letters to the editor: Staying motivated, hope and aHSCT

Rewards as motivation
I was relieved to read that my lack of motivation in life was tied to my MS (“Not feeling motivated” Summer 2022). My way to help combat it is to create a reward system for myself that gives me something to look forward to. I have dessert days two days a week. I have lost 65 pounds and kept it off for two years, so I am still reticent to eat too many sweets and my dessert days are a treat. I also tell myself, “If you wash the dishes right after you eat, you can have a piece of dark chocolate (only 55 calories).” My point is that if I have something to look forward to, no matter how small, it makes me happy.

Pam Rogers, Florida

Hopeful stories
Thank you to Jane Markey for sharing her “My MS journal” (Summer 2022). Her hopeful and honest approach to her life with MS gives a down-to-earth account of the journey that those of us who have lived with MS for decades can relate to. I was diagnosed in 1982. Additionally, Julie Eberhardt’s aHSCT story is fascinating and hopeful. Potential life-changing treatments for people who are facing the challenges of MS lifts my heart and soul.

Patricia Werner

Never give up
I am encouraged to see your article on aHSCT (“aHSCT: A promising treatment,” Summer 2022). I was diagnosed with relapsing-remitting MS in 2002, and after 11 years had failed on three disease-modifying therapies (DMTs). I did my research to find alternatives, reading over 260 research abstracts of current, proposed or completed clinical trials. I chose to pursue the trial run by Richard Burt, MD, at Northwestern Memorial Hospital. I was initially accepted; however, my insurance denied my claim. I fought for two years with appeals until it was finally approved. My motto has been: “Never give up, never surrender.” I received aHSCT in 2015 and am pleased to report I am still in “remission” and feel great after nearly seven years. I consider this treatment a life changer. Thank you for letting your readers know about this treatment and I pray it becomes much more readily available.

Noreen Purcell, New Mexico

Promising update
Thank you for the great stem cell update, recommendation and sharing Julie Eberhardt’s experience with aHSCT (“aHSCT: A promising treatment”). About five years ago, I learned about the aHSCT procedures being performed in Latin America and wondered why this treatment hadn’t been studied in the United States. The studies performed by scientists are groundbreaking, and I applaud participants for their bravery. Also, thank you National MS Society for investing $60 million in 68 additional stem cell studies. There is still much to learn but we’re making great progress. I’m looking forward to results from the BEAT-MS study.

James Stewart, California

Tags: Fall 2022