Thank you!

[Fullofheart98]

Hi all,

I just wanted to write a quick message to say how wonderful this forum is. I’m 24 years old, with cardiomyopathy due to a lamin gene from muscular dystrophy, I’ve lived with it my whole life and I’m not going to lie have at times recently been a bit scared about my future. However, having joined this forum and reading all your experiences and how you live life to the full it has given me such comfort to know that a life of heart problems does not have to stop you. I truly wish I’d of joined this years ago, it would have brought me so much comfort. Thank you to all of you for sharing your stories and supporting people x

[RufusScamp]

Good to hear that. I think many of us have experienced that fear, but it is good to know one is not alone. Wishing you a long and happy future.

[Fullofheart98 in reply to RufusScamp]

Thank you Wishing the same to you!

[MummaSoap]

Hi Dodgyticker, I’m glad you’re finding the forum beneficial. I have really found comfort in chatting things through with others here; I’ve found the vast majority of people I’ve come across to be really kind and supportive and there’s certainly a wealth of knowledge and experiences which I’ve been so grateful to receive.

Wishing you all the best on your heart health journey. If you don’t mind me asking, what is a lamin gene?

Best wishes

Soap

[Fullofheart98 in reply to MummaSoap]

Thank you!

I don’t mind at all - I have a mutation in my LMNA gene (also known as the lamin gene) which is what has caused my form of muscular dystrophy and also my cardiomyopathy!

[MummaSoap in reply to Fullofheart98]

Thank you for answering my question, I hope you have a lovely day 🙂

Soap

[ParrotLover22]

Hello. What a lovely thoughtful Post and you're right a Life full of Heart Problems does not stop you living your life! Live it as best you can and try not to dwell on it and overtake everything else

[Fullofheart98 in reply to ParrotLover22]

Thank you ! I absolutely will enjoy every moment.

Wishing you all the best and a very happy life

[ParrotLover22 in reply to Fullofheart98]

👍👍👍

[Kristin1812 Heart Star]

I have a very cheeky idea! Do ignore if its not helpful.

Would you consider changing Dodgyticker to something as positive as you sound?

Full of Heart (a phrase used by ParrotLover22, above) might suit?

When my daughter told me ‘you're not defined by your illness’, it helped me. A lot.

[Fullofheart98 in reply to Kristin1812]

That name sounds a lot more fitting and positive!!

What a great idea, I will change it

[Kristin1812 Heart Star in reply to Fullofheart98]

Thank you for taking it so well! You do have a lot on your plate….. so do keep in touch if it help

[Yellow26]

well said

[intheweeds]

I agree this forum is great for all of us with dodgy tickers. Thank you for your lovely message and I hope you stay positive and enjoy each day x

[Fullofheart98 in reply to intheweeds]

it really is! Thank you very much, I hope you enjoy each day too x

[kid12kg]

That’s amazing! Wish you long and happy life.

[Fullofheart98 in reply to kid12kg]

thank you so much, the same to you!!

[Alixia]

HelIo, I just read you have the Lamin gene. Are you part of the Facebook groups Laminopathies Support Group and LMNA CMD? They are a treasure trove of information and support from other LMNA patients.