I was born physically handicapped. I have Nemaline Mypathy. I just want opions on how you fell about this.?

Mind you I can walk. Nemaline Myopathy is like sever weekness in my muscles. To know more information PLEASE reach Nemaline Myopthy to know more. I am still young so I don't fully understand what it is. I just wanted to know your peoples opions about people who are physically disabled. If you know or have loved ones that are physically disabled like I am. Your probably know what I'm talking about. I've never meet another person with Nemaline Myopathy and there is no sure for it. I have it for the rest of my life and I'm only 14.

I feel a lot differently about disabled people than I did when I was your age. I used to be very impatient with elderly and infirmed people who slowed down my pace and got in my way.

Until my father got ill and was confined to a wheelchair. Now I go out of my way to speak to everyone who is infirmed. It's more than just opening doors, it's taking time to know the person. Not to sympathize, but really, just to acknowledge that I think they are important.

When I was 6, my best friend was deaf, then he moved away. And thinking back, this was the only disabled person that ever befriended, until college. It was just immaturity.

I think kids today are a bit more accepting of people who are different. And maybe I'm naive - you certainly can correct me, but there is so much media exposure showing differently abled people on tv, that it's becoming less of an stigma.

I think you are extraodinarily intelligent and very courageous.

wow...i read up on this...seems like some people do not get it/have it as bad as others...i have a cousin that as MD and could get around by crawling with his hands...he is now permantly in a wheel chair...im sorry that you have it and having to go thru this during the difficult teen age years....just remember....GOD will never put you through something that HE knows you cant handle !! Be strong !! You may be able to teach others about your disorder and start your own support group online !! Someone having a hadicap does not bother me at all...in fact, I wish I could learn more about things like that....to me, it is fascinating to learn..Good luck and best wishes !

First, some links (you probably already know these, but just in case)

Nemaline Myopathy Foundation: http://www.nemalinefoundation.org/

MDA: http://www.mda.org/disease/nm.html

Nemaline Myopathy Newsletter and a contact: http://www.medhelp.org/amshc/amshc491.ht...
This link is on the one above for a support group: http://www.davidmcd.btinternet.co.uk/

Yahoo Support Group: http://health.groups.yahoo.com/group/Nem...

I'm going to tell you that your muscles only limit you as much as you allow them to. I co-founded an organization for children with a rare genetic disorder, my son is autistic and his attendant has a mother with muscular dystrophy. My whole life is about disabilities it seems... and so far, what I've learned is this: You can have a disability and be awesome or you can have a disability and be a total butt. Awesome people and butts come in all different shapes, sizes and levels of ability. Never forget that.

Stay focused on who you are. At 14, you're on the edge of making those decisions you know? It's completely within your control to choose who you're going to be.

Educate yourself to the max about the disorder... and then cope with it as you would any other hand dealt to you. Blindness, deafness, physical impairment, chronic illness, abuse, rape, neglect, divorce/death of parents, all these things can shape who you are, positively or negatively.

Choose to learn all you can, teach what you know, and be the best person you can be in every way.

I wish you my personal best and I hope for you that you're surrounded by folks who love you.

Never knew or heard of this disease. So I went to a search
engine learned something.
Such as muscle weakness, curve spine in children, genetic and etc.

So I wish you well and thank you....now I learned something new. Myself I have a TBI abnd SCI.....use both w/c and walker.
My disability is not from birth but alcohol related as an adult.
You know thar are Times you think nobody can relate...but
there are countless of people with various disabilities.
It seems the ones who do not understand are those without
disabilities..... 'the norm.'
Anyways wish you and your family well. L8ter'z!