Acceptance and sharing diagnoses
I have recently been diagnosed (Dr Peter Jones and also UIDL) with FSHD1 at age 49. I am just beginning to learn what I can on the topic. Right away I am realizing I am very fortunate because my primary symptoms are a loss of my pecs, some weakness in the legs and hips, and chronic tight muscles with related aches. When my dad was my age he was using a cane to walk and braces for foot drop - that was 30 yrs ago and the doctors didn’t know what kind of dystrophy he had. Now we know.
Because my symptoms haven’t disrupted my life and I am getting to an age when people’s mobility and activity level declines, I am not sure all of my symptoms are from FSHD. I might be in denial or just hoping that it will not progress significantly for a long time. I also haven’t told anyone except my wife, sister, and therapist.
I have two kids, 18 and 12 and I feel like I should tell them. My 18yr old because he is starting to lift weights and has a very underdeveloped upper body that leads me to think I may have passed this on to him. My sister is adamant that I do not tell him because he will worry. I feel like I should because he may do damage if he pushes himself too hard in the gym. My therapist hints that I need to tell my family and social circle to fully accept what is going on and I can’t control how other people react. I also want to have people know why I have gotten skinnier and weaker over the years.
I think I can share the news and facts without being an alarmist or creating worry.
Has anyone else been in a similar situation? How did you decide on sharing the news with your children knowing there is a 50% chance they may have inherited the disease?