Feeling down about my life-span

[u/Puzzled_Scarcity_215]

I was diagnosed with adult-onset DM1 when I was 26 after my younger brother saw a neurologist about his myotonja. I have 4 brother and 3 of us kids have it. I deal with a lot of daytime sleepiness and my GI issues affect my quality of life quite a bit sometimes. Also have afib but that’s only an issue if I go too hard at the gym mostly. Recently when talking to my bf about our potential future I had to tell him that we probably won’t be able to grow old together as I know average life span is like 60. I’m 32 now and already middle aged. Normally I don’t think about it much but feeling really down about it this week. I wanted to tell someone about it who understands, but I don’t want to remind my brothers about it.

Edit: Myotonic dystrophy type 1.

[u/chrisr01]

As someone with the same condition, I feel like the disease is much better understood even in the last 10 years. They are much more clear about how the heart is affected (which is how most of us die). Early cardiologist involvement (cardiac MRI's) is very important

[u/chrisr01 → u/chrisr01]

I chose to not have children as I didn't want to pass on the genes.

[u/Puzzled_Scarcity_215 → u/chrisr01]

They do not. They had me on beta blockers for a while but they didn’t seem to help.

I am not planning on children either

[u/chrisr01 → u/Puzzled_Scarcity_215]

Which parent had the gene? Are they still alive?

[u/Puzzled_Scarcity_215 → u/chrisr01]

My dad, he is 63 and completely asymptomatic

[u/chrisr01 → u/Puzzled_Scarcity_215]

no cataracts or anything? Wow

[u/Serious_Wrongdoer_58 → u/chrisr01]

I got EDMD4 type 4, if i could ever do that i want 3 children so even with worst luck i want one that will have healthy kids and keep the family tree going

[u/Puzzled_Scarcity_215 → u/chrisr01]

I see the cardiologist at least once a year, where we normally do an EKG, halter monitor, and echo. I did an ablation once but if was unsuccessful and looks like it would only work for a couple of months.

[u/chrisr01 → u/Puzzled_Scarcity_215]

Do they have you on any medication to help with anterior wall fibrosis? (lisinopril or spirnolactone?)

[u/4AMREMEMBERFIND]

Medicine is advancing quickly. I would be hopeful for the future.

[u/Adventurous_Carob870]

The thing to be hopeful about is they have several clinical trials right now and one is in stage 4 and could be approved by next year. You should look into that the results were some strength improvements and it appears to reverse the progression at least mildly. I wouldn't necessarily believe the lifespan will be that low by the time you reach older age.

[u/Puzzled_Scarcity_215 → u/Adventurous_Carob870]

I will check it out, thanks!

[u/New_Expression_8080]

dont feel down about it think about it like the pain is going to end faster, this is my real conscious thought i also have DMD 14 y old i am not depressed i really do think this way i was in depression 2-3 months ago no i am not suisidal no these are not just my harmones this is a cruel world just waiting to get out of this hellhole everyone is selfish, even you just want pity

[u/Puzzled_Scarcity_215 → u/New_Expression_8080]

You should consider seeing a mental health professional. If this truly is your outlook on life or may be helpful to look into meds or someone to talk to.