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Hi Kelly,

Welcome to TalkMD. I understand that this is a worrying time, and you must have lots of unanswered questions. The members of this forum are here to support you and share their own experiences and advice.

If you want to, you can also ring the MDUK Helpline on 0800 652 6352 or email info@musculardystrophyuk.org. We also have a page on BMD https://oldsite.musculardystrophyuk.org/about-muscle-wasting-conditions/becker-muscular-dystrophy/ and a factsheet that you might find helpful https://oldsite.musculardystrophyuk.org/about-muscle-wasting-conditions/becker-muscular-dystrophy/becker-muscular-dystrophy-symptoms/

Best wishes,
Emma

Hi Kelly, welcome to TalkMD.

There must be a lot of things going around in your head right now and everyone deals with a diagnosis differently. It sounds like your son’s diagnosis is a fairly recent one and I’m sure you have a lot of questions. It can be helpful to write them down as you think of them – I find my mind goes blank the moment I enter the consultant’s room.

I think at the age of 7, it was much harder for my parents to deal with my condition than me – I adapted to the physical changes which were very gradual, not always plainsailing, but it was my reality and most of the time I accepted it.

I have a different type of MD and even within sub-types there is variation as Ranald said. Please feel free to ask questions or just have a ramble about things. If/when you feel ready you might want to look up your local muscle group for support and info.

Keep in touch.

Hi Kelly, I was diagnosed with BMD at a similar age when my Nan noticed I ran on my tiptoes. I’m now 32 and whilst I can’t walk up the stairs without a rail or get out of a chair with a little difficulty I live a fairly ‘normal’ life. The condition affects people in different ways but there is a much better support network around now than when I was a child. My advice would be to keep him as active as possible and doing things that one day he might struggle with (like walking up stairs) but most of the struggles I have only really started in my mid twenties.
Stay positive, if you have any other questions then this is the place and everyone will be more than happy to help.

Charlie

When I was discharged from the children’s hospital at 16 there was no pathway into support around the condition for adults. That has changed now and will stand your little boy in very good stead. I’ve met people with the condition who were window cleaners and living very active lives and didn’t notice a deterioration until much later in their lives.
Charlie