United States – Southeast Region

Photograph of Melissa

Hello my name is Melissa. I am 33 years old currently living in Georgia, USA with GNEM. I have an 11 year old daughter who soon turns 12 years old in October. I was properly diagnosed in January 2016 with what doctors called HIBM (Hereditary Inclusion Body Myopathy/Myositis) now known as GNEM but I was affected by my rare condition in 2012 when I started falling down for no reason at all. Now, it’s been 8 years in total living with GNEM and every year has taught me something new with the different transitions I had to deal with. I look forward to being part of the CPA team and helping others better understand this rare condition we live with day in and day out. Thank you.