Lymphovenous Canada: Sansu Functional Designs for Living

Sansu Functional Designs for Living was established through a collaborative project research project between Princess Margaret Hospital and Ryerson University, School of Fashion. Initially the goal was to design a bag suitable for breast cancer survivors suffering from lymphedema. Swollen hands and arms and decreased fine motor skills, made it difficult for these women to pick up objects. Their ability to carry personal items in a purse or handbag was severely limited.

Professors Susan Barnwell and Sandra Tullio-Pow from Ryerson University's School of Fashion have designed a modular sling bag and belt that includes an armrest discretely incorporated into the back section, which address these concerns. A line of clothing was also designed. Styling focuses on comfort and camouflages arm asymmetry. Both designers worked closely on the project with Dr. Joyce Nyhof-Young of the Department of Radiation Oncology and the Breast Cancer Survivorship Program at the Princess Margaret Hospital in Toronto.

Tullio-Pow, Barnwell and Nyhof-Young's research poster Lymphedema Lines: Clothing and Accessories for Female Breast Cancer Patients at Princess Margaret Hospital, won top prize at the 2006 Annual Meeting of the American Association for Cancer Education. A follow-up paper entitled I Can't Find a Thing to Wear: Designing Innovative Functional Apparel and Accessories for Female Breast Cancer Survivors with Lymphedema, was accepted by the Canadian Association of Radiation Oncologists for their Annual General Meeting. Largely funded through Ryerson University, this research also received funding through the Princess Margaret Weekend to End Breast Cancer, and the Ontario Partnership in Innovation Commercialization (OPIC) grant.

Sansu Function Designs (which combines the first names of Sandra and Susan) is now in the process of putting out patterns for accessible clothing for upper body arm lymphedema - common in breast cancer survivors - and is looking forward to developing future designs for clothing for the lower parts of the body.

Joyce: We are quite a unique threesome! We each have very different skills and expertise, which is a real strength. In medicine we do a lot of interdisciplinary work. This project is so wonderful, because it extends that team approach to cancer care and support beyond medicine to include the skills and creativity of fashion designers.

The initiative got its start through the Princess Margaret Hospital "The Breast Cancer Survivorship Program" (www.survivorship.ca) which has a lymphedema clinic as part of its aftercare program.

Krys Moore, the nursing clinical lead, noticed that women were having difficulty carrying things and doing their daily activities because of the size of their arms, and problems with flexibility and mobility. We thought, we really have to help these women through some kind of shoulder bag that wouldn't aggravate their lymphedema. We had some good ideas about what a bag needed and a plastic trough that could be used as an arm sling, but they were just not practical and looked awful. We realized we were way beyond our expertise. So in the summer of 2005, I called the School of Fashion Design at Ryerson University and the Dean of the school hooked me up with Sandra. That's when magic was made.

Sandra: Joyce phoned me initially the 3rd week of July 2005 when most of academia is on vacation. I was busy trying to pack up a husband and three children for the cottage and she needed a proposal for next day. So we quickly patched something together and submitted it.

I also spoke to Susan and we pooled our talents. We got started in the fall 2005 with the assistance of a second year medical student from the University of Toronto - Katherine Poon - and did our first focus groups in February of 2006. The focus groups we held were made up of breast cancer survivors from Princess Margaret who had developed secondary lymphedema. We did about 3 focus groups with 13 participants.

Our questions for the women focused on how lymphedema impacted their daily life, what their clothing needs were, solutions they had engineered themselves and what they were looking for in terms of fit, fabrics, price points and accessories. We also got a lot of information about what they were looking for in a purse or handbag.

Joyce: The whole research project went through a rigorous ethics process. We recruited women for the focus groups through the hospital and then they passed on the information to people they knew through word of mouth - one woman would tell another woman.

The women provided us with information that went beyond our initial concept of a bag and sling. T here was an evident need for clothing. The women were anxious because they couldn't find clothing that would fit them. Their lymphedema meant that cuffs were too tight in traditional ready to wear clothing. Armholes didn't fit, sleeves were binding because of the size of their arms. It really gave us good insight on what needed to be done to design clothing that would fit breast cancer survivors with lymphedema.

Susan: It was quite an emotional experience because when these women were telling us the technical difficulties, they were also expressing so many human concerns. I think one of the aspects that hit all three of us, is that they didn't want medical garments. They wanted garments that were fashionable, that would make them feel and look better. And that was an overriding factor that we kept in mind as we undertook this project.

There were many touching stories. One woman went to her daughter's wedding in a beautiful dress. Her arm swelled up and she actually had to be cut out of the dress. With that type of information we developed a line that was fashionable and functional.

Sandra: In our clothing line we focused on camouflaging any asymmetry that was in the body. One of our patients was an accountant. Her business attire was the Oxford shirt. That was what she liked to wear so we created a blouse with that type of styling, except that it could accommodate her arm.

The women were telling us how worried they were about their arms - bumping them against people and things on the subway, in crowded places. The beauty of Susan's purse design is that the sling is very subtle - you don't see it. The sling is behind the bag and it offers protection and a resting place for the arm.

Joyce: One of the women in our focus groups talked about how sometimes she used a medical sling and then the questions would come, "Well what happened with your arm?" Curious and well-meaning, but the same point - you had to launch into this big story. She would just say - "Oh, I hurt my arm". She didn't want to repeat the explanation over and over.. The beauty of the bag is that you can rest your arm and no one has to know. It is very unobtrusive. You can use it to carry a newspaper when you are not using it for your arm.

Sandra: After the initial data were collected in early 2006, we spent the summer designing. Michelle Fagundes, a fashion student at Ryerson, who is currently working for the fashion clothing company Abecrombie and Fitch, helped us create the patterns and produce prototype garments.

And at the end of the summer we met with Joyce and Krys Moore at Princess Margaret and showed them what we came up with, based on the feedback we had received from the patients. We presented that information at the American Association of Cancer education in San Diego in October 2006. We met with a really positive response and won best poster at the conference that year.

Joyce: In early 2007 we enlisted three more medical students to help with the research and move the project forward - Jasmine Yu, Rohit Pai, and Leslie Mok. Sandra and her assistant graded the patterns into a size range, constructed clothing prototypes and then took the prototypes to four women of the different sizes and asked them to wear them for one month. Field testing of the collection happened in February of 2007.

Sandra: Participants were asked to keep diaries - how they felt when they wore the clothes, did they get compliments, did it function for their everyday living, how did it wash? We found a fabulous fabric that was a soy cotton and a lycra knit that feels just like cashmere. And we wanted to know how that performed in washing and drying in the dryer, etc.

Joyce: We did more focus groups and interviews with women themselves on the clothing that Sandra had constructed and the bag prototype that Susan had made to gather their impressions on how the they worked for them and did the clothes and bag perform the way we intended. We also did testing with apparel production and fashion marketing/media people. Garment fitters and community and hospital-based health care providers who worked in the field - all added their bits. For example, Susan and Sandra had designed a coat and redesigned fabrics, buttons and fittings based on the feedback of the users.

Sandra: We were doing three projects in tandem at that point: we followed the four women through the testing. In another project a student would show the women ideas and sketches and prototypes and then followed their feedback to the designs - whether they would purchase such things, did they like them? Then we had the third focus groups with the health care professionals and the fashion people. They were small intimate groups which provided us with detailed feedback. The whole process took about 3 years.

Susan: In the field tests, the bag came to the forefront as something that seemed to be the most successful to develop first. When we discussed it, it was easier to produce the bag in large numbers, because with the clothing you have to produce multiple sizes and colours. Because of the uniqueness of the bag as a sling arm support, we were able to file for a patent. In 2007 we did further research to refine the bag, and we also did some research on magnetic fasteners for clothing. Then, while I was in Hong Kong I located a company that could manufacture the bags. We got a patent, and then after that we got a small government grant to manufacture 400 bags, which we are now distributing in an extended market trial.

It's been a learning process that is still continuing. Sandra presented a paper at a conference in San Diego this October and got incredible feedback and we've got a lot of response and inquiries.

Joyce: LATEST NEWS - the week of November 5-8, 2008 Sandra presented at the International Textile and Apparel Association Conference in Chicago and our accompanying paper dealing with our initial needs assessment and focus groups, won the best paper award!

What has been very interesting to me is going to conferences and the positive feedback we have been receiving. Every time someone sees it they comment on something else and it gives us new ideas and new approaches that we can incorporate again. People from different disciples - for instance someone who was a geriatric physiotherapist - would come by and say, "Gee, that sling would work really well for someone who is elderly and has arthritis." It seems that there is a real cross-over between audiences because of the uniqueness of the design.

Sandra: When I was at the National Lymphedema Network (NLN) conference in San Diego this summer (August 2008) I presented a paper on our research. I had a question at the end of my presentation by a man. He said that this is an area that is totally under-serviced. The breast cancer group gets lots of attention and funding and there is a whole other group with lymphedema in the leg and how do you accommodate that for every day living. And I thought, "Wow - that's the next project."

Joyce: And at the Lymphedema Association of Ontario (LAO) in October 2008, the lymphedema in the leg issue came up as well. People with lymphedema in lower limbs are becoming more vocal. They are asking - why can't we have these things too? And they are realizing that unless you speak up, things don't happen.

Sandra: Now that we have an incredible product - the bag - that can improve the quality of life for a lot of women and we are trying to get it out to them. The clothing is another matter. Once you need a size range from small to extra large, different fabrications you run into problems on stocking them. We aren't set up to do that.

The university has a computer-aided design system which can help us get clothing patterns into the system, grade them to a size range and sell the paper patterns with all the sizes nested into one. It is something that goes into an envelope that can be popped into the mail. Then it will rely on the resources of the person to pick a fabric and find a seamstress if they don't sew themselves. It is a solution for many women, considering the alternative of nothing out there that can accommodate the large arms.

Joyce: Something that came up in the focus groups is that when women find a product they like, they buy six of it in different colours. So a pattern approach would work!

Sandra: If women can find something works in multiple colours - they make several versions of it and they have a wardrobe. So what we have got is the most viable option to pursue. The other thing I am kind of excited about is that I have a new elective coming on board in the winter term at Ryerson called: "Functional Apparel Design". So I am hoping to turn a whole group of 30 student fashion designers on to the idea of engineering apparel to suit a specific need, as opposed to simply designing for the catwalk and the perfect size 6 or size 8 that you could put a paper bag on, and she would look great.

It is quite challenging and quite fulfilling to design for someone who has a special need and make them feel beautiful. And that's what I am hoping to do - get a whole group of students who are interested and willing to go on to the next step.