Please take the time to read this I've seen someone very close to my heart receive this news and have seen the effect that it has on a family. It's heart breaking knowing the life a child with DMD has ahead of them. Anyone that is a parent know's that we would move hell and earth to make sure our children are healthy and happy. But imagine feeling so helpless. And being told your child might not live past their late teen's early 20's I'm hoping that even if it's only one person that takes notice of this, it will be one more person aware of it. DMD ( Duchenne muscular dystrophy) is not a very well known disease but affects 1 in 3,500 boys. It's a terminal inherited condition. There Is No Cure For This at this present time. This is a disorder that is cause by a mutation in the X chromosome. While both girls and boys can carry It. Females rarely exhibit any signs. Symptoms usually appear in children before the age of 6. Most children with DMD have nothing wrong with their mental abilities and are as cheeky and naughty as any other child. Most children lose the ability to walk by the age of 12. This disease affects the muscles. First to be affected are the muscles of the hips, pelvic area, thighs, shoulders, and calf muscles. Muscle weakness occurs in other Areas but not as early as on the lower half of the body. Some people with MD enjoy a normal life span with mild symptoms that progress very slowly; others experience swift and severe muscle weakness and wasting, dying in their late teens to early 20s. There are different types of DMD Myotonic Duchenne Becker Limb-girdle Facioscapulohumeral Congenital Oculopharyngeal Distal Emery-Dreifuss Like with Any disease awareness is the key to get more funding for research. And of course the hope of a cure.
That made me sound like a dick. Basically i was trying to say i didnt know about this but now i do.....? Yeah.. Anyways i realised i have actually heard about this, i actually learnt about it at school a few years back, just remembered, its been around since then 1800's or something right?
I'm completely in agreement, I didnt even know what DMD was before this, but I think more people like me should be made aware
One of the classical signs in DMD is Gowers Sign. That's when the little boy has to almost 'walk' his body up to a standing or sitting position with his hands after he has been lying down. People who do not suffer DMD get up in one fluid movement. We got told if we were ever to see our child doing that, the best action was to take them to a doctor for an immediate diagnosis. Great thread.
Up until last year I had never heard of this before. Like With most things, unless it happens to you or someone close to you we don't tend to know about things. The fact that is affecting so many little boys and the awareness is so low still, kind of makes me want to scream. But again it's all down to awareness. I only know what I know from the many things I've read and from what I've been told by the person that is going through this (due to her little boy having it) . she's amazingly strong and I can't imagine how she copes daily. But she does and I can't put in words how much I admire her. So I know this is long but it's worth reading. (Excuse the typos)
She is amazingly strong and I have so much respect for her and also for you for being there by her side and supporting her, much love to you both and the little man?