OPMD

About 4 years ago I was diagnosed with a very rare form of muscular dystrophy called oculopharyngeal, also known as OPMD. It’s a slowly progressive disease that initially affects your ability to swallow as well as the drooping of the eyelids. My eyelids were so bad that it affected my ability to see well. In October of 2023 I had surgery to correct that. Who knows how long that will last, but for now I'm super happy about the results! For the last year or so my hips and legs have become significantly weaker. It affects my ability to walk and be mobile. I have fallen a few times so now I use a rollator to move about my home. It keeps me mostly homebound and bed bound. It can be so very lonely. For someone who is a people person, this is very hard. I will say that I have a wonderful husband who takes great care of me, at times making me feel guilty and like I am a burden. I also struggle with fibromyalgia, ibs, hypothyroidism and incredible fatigue! #OPMD #ChronicFatigue #Fibromyalgia

After having issues with swallowing for over 15 years and recently experiencing more droopiness in my eyelids, it took my ophthalmologist to consider I might have this disease. I was referred to a neurologist who also believed I had this disease. My next step was to get genetically tested. I had to wait a LONG 3 weeks to get my result.

Even though I was certain I had this, it was still a blow to have it confirmed. I'm still struggling with the implications for my future. I'm 66 and typically symptoms start between the 40's and 50's. I never realized there was a connection with all my symptoms. I'm guessing most people don't. I'm sure my mom and grandmother had it, but were never diagnosed.