I want to stop getting weaker.
I want this rare disease nightmare to stop.
I don’t know why but I just feel so sad.
I feel like I’m made to suffer.
Sorry guys, I shouldn’t be bothering you with this. I am really sorry. But I’m struggling really badly.
Phil says I use it as an excuse. Really? Come on.
Being sad? It’s definitely not an excuse. You are loved.
It’s OK to be sad. It’s OK to suffer. You just have to accept life the way it is.
I have a rare and somewhat debilitating heart condition, I can relate. You’ve just gotta do the best you can in the day you’re in. (((hugs)))
U are not weak u fight with disease, that makes u strong.
hugs laetitia hope u feel better soon.
Hope you feel better @anon10648258.
Much love to you @anon10648258. We’re all rooting for you.
Do you remind yourself of someone? Because sometimes when I’m depressed I’m simply not being myself. We pick up conditions of the people around us and sometimes that’s not a good thing but it’s part of being a social animal.
@anon65600981 @shutterbug @antidepressant044
Thanks friends. Sometimes I feel exceptionally sad about my rare disease. Some days I just feel weaker. Thank you for being here.
@PinCushion
No, not really. My rare disease alone makes me really sad. The future is kind of set for me unless there is a cure out there. It just makes me really, really sad. Thank you for being here.
Are you going to share with us what your rare disease is? It might help us to know.
Autosomal recessive titinopathy (titin-related muscular dystrophy).
Basically a form of muscular dystrophy caused by the TTN gene. Causes degeneration of the muscles and progressive atrophy. Also causes bunch of breathing and heart problems, as well as joint pain.
No cure, no treatment. Nothing.
I mentioned it to couple people before but I don’t talk about it often because I feel like people are annoyed.
sorry laetitia, i hope things ease for you, take the good with the bad,
I’ll be praying for you
I’m so sorry. I don’t think people are annoyed. You deserve sympathy and understanding.
I’m wondering how they were able to diagnosis this
It does sound rare
I’m sorry if you’re in pain
Sounds similar to what my sister has Elhers-Danlos syndrome. Deteriorating ligaments and bones and muscles.
@Daze they diagnosed me via genetic testing. My variants are still not well-known so it’s just a general type right now. It’s just the beginning.
@Loke yeah it’s a bit similar to EDS but just a different category of genetic diseases!
Is EDS genetic? I didn’t know that. I used to always ask God why was I able to dance and my sister no. (I took dance lessons as a kid). I didn’t think it was fair.
Yes, it is. EDS and MD are both genetic.
I felt similar to how you felt about your sister. After I was diagnosed, I thought to myself “Why me?” because I was just so frustrated with the disease. I’m so sorry to hear about your sister’s EDS. I hope she’s doing ok.
I’m so sorry, @anon10648258. I don’t think anyone is annoyed, though. Feel free to talk about it all you want; I know I don’t mind. Hugs.