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Congenital myotonic muscular dystrophy - Carers UK Forum

Congenital myotonic muscular dystrophy

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Hi everyone, I am Kimberly and I have myotonic muscular dystrophy. I just turned 42 and went to hell and back in the last 2 years! I had emergency colectomy on June 1st 2020 because of a volvulus caecum and had to remove 2.0 inches of my colon, my ceacum, as well as my appendix because of advanced gangrene! Then that september I had my gallbladder removed by laparoscopic surgery which cause the flesh to separate from my right side ribs, and had a collapsed lung the second night while I was already back home! In January 2021 I had a hysterectomy because of a rare and aggressive utérin cancer! Also removed both of the Fallopian tubes! In late February I was diagnosed again with a rare and dangerous cancer on my left cheek (face) as well as on my back near my spine. I had 3 unsecssefull surgery and finally went for Moh’s surgery to remove all the cancer! I now have a big mass on each of my ovaries and a 5 mm stone stuck in my right upper kidney! All this after my husband of over 20 years happily married had an affair with a old retired lady he met one night at the bar while he was working far away from home. My brother is very I’ll because of muscular dystrophy and so is my mother! The hardest for me is my 13 years old son who was diagnosed at very young age of congenital myotonic muscular dystrophy. He has over 2000 CTG repeats in his DNA! The Dr.’s all keep telling me that I am lucky he can walk, talk skate, swim and ride a bike but the pain and difficulties that he has to go through are very hard on my heart and my mind! I always feel that I am the reason he has to go through all of this. The past year he has lost a lot of muscle mass and I lost lots of wait (was115lbs went down to 84 and now 96) since last surgery i had damage done to my trachea so I have a hard time swallowing and the myotonia appeared over night and is progressing so rapidly I am completely devastated and depressed! My dr suggest I talk with someone so this is why I am here! Any advice would be very helpful!

Best regards to all of you

Kimberly
Hello Kimberly

I wanted to extend a warm Carers UK welcome to our forum. I can only imagine how hard the last few years have been for you, it's a credit to yourself that you are being so incredibly strong for your son. You have come to the best place to chat to other carers. There are lots of ways you can connect with other members too Kimberly, firstly our forum, which you've already found and I know others will respond to your thread. We also run weekly sessions where members can come together online. Since lockdown we've been running a weekly Care for a Cuppa session on zoom on a Monday afternoon for about an hour, where carers can come together, take a short break, chat, support and share advice with each other, we've had lots of new members join this session recently, many have said they've found it really helpful and supportive and it's nice to be able to take a little bit of time for yourself. I've attached the link to the sign up page for you, there's no pressure to share anything you're not comfortable with.
Care for a cuppa : https://www.carersuk.org/help-and-advic ... ne-meetups

We are also running a series of weekly Share and Learn sessions, where we run a series of fun and relaxed online sessions where visiting speakers who share tips and skills on a range of topics - please have a look at the link and see if one grabs your attention.
Share and Learn : https://www.carersuk.org/help-and-advic ... e-sessions

with all good wishes
Ingrid
Welcome to the forum. There is only so much one carer can manage.
I was also a multiple carer for a few years, never any mental peace.

I'm concerned that you don't mention any help at all.
Mum and brother need to have care that does NOT rely on you in any way.

What would help you and your son most at the moment?
Do you both get support from Social Services?