Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Please Help

Hello everyone. A quick background to my topic. My name is Ben Wykes, and I am studying Fashion Design at Nottingham Trent University. My mother is a long sufferer of the disease we know to be called ankylosing spondylitis. I want to get a better understanding of the condition itself, and anything at all related to it. For our latest section of the course, I have decided upon my own brief, and it is revolving around ankylosing spondilitis. My mother will not wear certain types of clothes due to being self conscious of the way the disease has affected her body. She also says that she wears clothes for comfort, but there is nothing really out there catering specifically for ankylosing spondilitis sufferers. I want to get in touch with as many people as possible and carry out as much research into this, with the ultimate aim being to design and make a range of clothes for the benefit of the person with arthritis. This is where you come in. If anyone feels that they have any information surrounding this subject, then please dont hesitate to get in contact, any information is welcome. Are fastenings a particular headache for you? Do you desire clothes with more support? Would padding around the inflamed areas be of benefit? Would clothes with more give in them be of help? What sort of clothes do you avoid? What sort of clothes do you buy? Absolutley any contribution will be valued. Initial ideas are revolving around the use of removable wheat bags for warmth, changeable hemlines for skirts so that whatever the degree of spine curvature, the hem will always sit straight and side openings with concealed fastenings for garments such as jumpers. This will enable them to look like a standard jumper, but will allow the wearer to put it on and take it off without having to put it over the head. I am hoping that by undertaking this project, I can build up an awareness of ankylosing spondilitis and hopefully reach people who may not have been reached already. Correspondance with Fergus (NASS) has thrown up the opportunity of an educational grant, so this is something that I am taking very seriously. Clothes already out there for this market seem to address the issue of disablilty, but then neglect the need for stylish design. I feel that this shouldn't be the case. Please get involved, who knows what may come of this.
Thank you for taking time to read this,
Kind regards,
Ben Wykes

Ben, this is very interesting as I know that many people with arthritis in general, not to mention AS, can have difficulty fastening clothes or getting them to fit properly because of arthritis related body changes.

With regard to AS specifically, I know that women tend to get a slightly rounded (sometimes more than slightly) shoulder. We don't generally get the severe rounding that men get, just enough of a shoulder stoop to make it difficult to get off the rack clothing to sit properly. This might be something to bear in mind when designing clothes for us; although, how you would fix that is a mystery to me.

Good luck with this.

Hugs,

Clothes that fasten easier would be a definate help. Sometimes those tiny buttons are so difficult. It's also hard to put on socks and shoes for the gentleman especially. My boyfriend has a disease similar to AS that gives him a curvy back. He has a hard time finding shirts that fit right. They always seem to be too short in the back. I know I hurt most when it's gloomy and cold. Outdoor clothes that warm the hands, neck, back and hind end (the SI joints) would be helpful. I like to ride in my boyfriend's car with the heated seats because it feels so good on my back. It seems like heat packs would be annoying if you have to go somewhere. Maybe something battery operated but then I'm not sure how long those would last.

Sharon

Hi Ben,

Very admirable what you are trying to do for your Mother and other people suffering from this disease.

Some of the things that I can think of are...

Looking at ME you can not tell I have an illness except all the weight from the steroids, when I turn to the side I can see the hump like below my neck in the back and I walk with a limp.

Shirts that you can just slip over not alot of buttons, pull on pants...zippers and buttons are terrible when your fingers hurt.

And something I cant figure out....why people dont make stylish clothes it would only take more material..not everyone likes wearing BIG flower prints or Moo moo dresses.

I dont know some kind of socks with support around the ankles or some kind of heat or cool in.

Let you know if I can think of anything else,

Lisa

Sharon,

GREAT Points.

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It's also hard to put on socks and shoes for the gentleman especially. My boyfriend has a disease similar to AS that gives him a curvy back. He has a hard time finding shirts that fit right. They always seem to be too short in the back.

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For me I can't reach me feet and I need help putting on a shirt of any kind. For me Button shirts ( dress shirts ) are imposible because they just don't fit right around the neck and if you button them up they really don't fit. Pants are also a very big problem for me as well and would be for women too because being stuck the way I am the pants don't go up high enough ( they just cover the crack of my butt )and when I sit down the seem to go even lower. The only pants I can wear are sweat pants because of the elastic waistband but they get very hot in the summer and then you start to get rashes and things like that. I have tried to find people that could make pants to fit me better but they kep showing me the pants with the flap in the back like little kids wear or people wearing Depends. I can't go to any place nice because I can't wear anything but the sweat pants and people do look at you like you don't belong or like you are some kind of homeless guylooking to rob them.

John

Hi Ben, and welcome to our family.

My biggest problem with clothes is that I'm crooked. I don't know if it's from the AS or scoliosis but when I wear a skirt it doesn't hang straight. Unless you design skirts with a wavy hemline or something similar, I don't know how you would address this problem, but I'd be interested in finding out. Good luck with your endeavor.

Hehe, I have that problem with jeans showing too much crack myself and I can't use AS as an excuse. It's just the style these days. I can't wait until it goes away. Don't girls have any booty anymore? I was in the store and this lady in her late 30's was bent down looking at something with her crack in full view. I have so many pants I can't wear to work because they are cut way too low. Yeah I try them on, but neglect to do the sit down test lol. I'm too tiny to fit pants in the women's section. Go figure. My boyfriend thinks I just need to invest in some body suits lol.

My boyfriend has the same problem with his pants. We look everywhere for pants that fit and even bought him a belt but his boxers (and sometimes his crack) still show. I just worry about what they must be saying at work. He insists that he doesn't let them show at work but I'm not so sure about that. He was telling one of his coworkers the other day about his back and they said they didn't know it was his back they just figured he just had a little meat on him lol.

Sharon

If you could design tops that give the illusion of me standing straight I'd buy em all. Perhaps some padding in the chest area would be nice.
As far as comfort goes, design a line of pants that give plenty of room in the crotch and I'll add them to my order.
Again, a little padding would be nice.
Steve

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I was in the store and this lady in her late 30's was bent down looking at something with her crack in full view

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If you go up behind them and slide a pencil into the crack they tend to get up pretty fast but all you have to say is oop's I dropped my pencil and look you caught it and walk away.

Why is it when a man has his crack showing they call it plumbers crack but when a womean has it showing they don't?? Well to me a little crack never hurt no one.

John

I love the pencil thing!!! Oh my god, I might have to try it some time!

I do adore you John. Thanks for starting my day with a laugh.

Many hugs,