We have published a new e-brochure, “Not Alone,” by Kelly Mahon Hessler. Based on interviews with a wide range of FSH muscular dystrophy patients, parents, and partners, this e-brochure assures those who have received a diagnosis that whatever they are feeling, others have had the same experience. We also provide resources for people to get information and find support, whether online or in person, from communities of fellow patients to professionals.
When people receive a diagnosis of FSH muscular dystrophy, they respond in ways that run the gamut of human emotions. For some, the initial shock of learning that they have a rare genetic condition may give way to relief that there is an explanation for their weird symptoms. For others, the news triggers grief, fear, or anger. Some people want to immediately learn everything they can, while others prefer to avoid any reminder.
These are all perfectly normal reactions. The important thing is to know that you are not alone. Talking to others who have been down this road can be reassuring. There are a myriad of ways to adapt. It can be equally validating to speak frankly to someone about your fears.
How did you respond when first diagnosed? What have you learned from your journey? What were the most (and least) helpful actions you took? Please share your story in the Comments section.
“Not Alone” can be downloaded here. We are deeply grateful to Kelly for taking on this important project.