musclesman

Hi sngle1now20012001

They are kids, they should be allowed to be kids and not worry too much about the condition and not make them feel like this is hard to get assistance. It's important to feel good and safe as a kid.

I don't know what else to say, I'm sure you're great at assisting them. Wishes.

Hi theblackalchemist

1. My PhD is about rare genetic variation affecting quantitative haematological traits and I'm doing it at the University of Iceland and at deCODE genetics.

2. Not being able to itch myself where I want when I want

3. Since COVID started I've been isolated at home most of the time and not met any friends or family other than my parents. I haven't been in a store or wherever there is a crowd for most of 2020.

4. It depends where you live. I've been supporting the local Duchenne muscular dystrophy organisation and the Action Duchenne in the UK. Just look at local organisations in the country you live in. All money helps, which are largely used to support research and drug development, no matter how much it is.

Hi shineyink

Yes, I was born with Duchenne MD. I was diagnosed at the age of seven. My symptoms progressed with time, increased falling and hurting myself and various other symptoms. I got diagnosed unusually late. It's hard to talk about life expectancy, it was once said to be 16 years, now the life expectancy is around 30 years. But Duchenne MD is very different between patients, and some are even in their 50s.

This question was good, don't worry. I want people to ask whatever they want to increase the awareness of the condition. Take care.

Hi flekkzo

It's often hard to feel motivated when the times are hard. I have often forced myself to go on by chanting to myself "I'm not going to make my fear of death prevent me from reaching my goals".

About how to deal with things when feeling down, I've realised it's good to talk about it and even just cry and let it all out now and then. Allowing yourself to show emotions can be very freeing. For me, this has allowed me to let it all out in short amount of time so I don't have to feel bad most of the time. Still, this can often get very tough and feel like I can't go on.

I wish you all well.

Hi coopermoe

In my free time I like to read books, especially novels, lay jigsaw puzzles, and watching some good movies or seasons. I love to cook and bake, especially with friends. I'm not much into pop culture, but I like watching movies.

You should follow your heart and do what you enjoy. Thanks for the kind words :)