Knitted Knockers Nonprofit’s Comfortable, Adjustable Breast Prosthetic Fills Need
16 May 2016
For some women, Knitted Knockers provides the solution to that awkward time between a mastectomy or lumpectomy and breast reconstruction. When the healing scars are sensitive, the thought of wearing a hot and sweaty, heavy, expensive breast prosthetic just may not appeal.
A Knitted Knocker is a soft, hand-knitted breast prosthetic. Barbara Demorest is the founder of the nonprofit organization, knittedknockers.org. Her organization uses volunteer knitters from around the world to fill requests for the free, knitted breast prosthetic.
Her own story started in 2011 with those four dreaded words: “You have breast cancer.” The plan was to wake from the mastectomy with the breast reconstruction complete, but due to complications, that didn’t happen. Slowly, she realized that it would be a while before her new breast would be created. Without one breast, Barbara felt embarrassed and self-conscious in public.
For Barbara, this was her lowest point, and for the first time in her breast cancer journey, she let herself cry.
Frustrated and upset, she called the local breast cancer support group to ask for a recommendation or breast prosthetic to wear until her breast reconstruction could be completed. Unfortunately, they told her she wasn’t supposed put anything on the scars for a least six weeks. That’s not what Barbara wanted to hear.
At her physician’s office she picked up a brochure on breast prostheses. He told her honestly a lot of women weren’t satisfied with prostheses as a solution. When she asked him what she should do, her physician surprised her with the question, “Can you knit?” The explanation for this odd question was that another patient had brought in a picture of a “knitted knocker” and a website address.
Barbara’s First Knitted Knockers Breast Prosthetic
Barbara wasn’t emotionally in the place to knit herself one, but she had a knitting friend, Phyllis, who could help. She gave the
information to Phyllis, who did some research online. About a week later, while at church, she handed Barbara a Victoria’s Secret bag with a newly knitted pair of “knockers.”
Immediately, Barbara went to the restroom and put them in her empty bra. They felt so comfortable, light and soft, but the best part was knowing the love that had gone into making them just for her. That was the moment the idea for Knitted Knockers, the organization, was born, creating a kinder and gentler alternative to breast prostheses.
We talked with Barbara about knittedknockers.org, and the women they help.
Interview with Barbara Demorest, Founder of Knitted Knockers, Non-Profit Breast Prosthetic Supplier
I’m Taking Charge: What do you know about the woman who created the original Knitted Knockers?
Barbara: The original, original creation was a brainchild of another woman, Beryl Tsang, who had a mastectomy. She made a pair for herself, and she called it a “tit bit.” The evolution though, and where my doctor found it, was a young woman in Maine who owned a yarn shop. She had a mastectomy and created one for herself. This woman and her friends are the ones who named them “knitted knockers.” They thought they were great and started to give them out for free. She posted a pattern on her website, and that was where Phyllis found the pattern and revised it. When I tried to contact her, the website was defunct, and I got no response. I did find her number eventually and called her. I told her, “I’d love to help you; what can I do?” She said she no longer had time for the project and had closed the yarn shop. She was a young mother with kids and just didn’t have the time anymore. I asked if it would be okay if I used the name and then took the ball and ran. It has been revised several times since then, and there are other groups out there.
I’m Taking Charge: What are they like?
Barbara: It does feel very natural. I wore mine for three years. I wore it as I went through my first breast reconstruction, which was the tissue expansion. It worked beautifully in that situation because they are adjustable. You can order them in the size you want. They come in size A through DD, and even larger by request.
We leave the back open so it can be adjusted. The stuffing in the Knitted Knockers can be removed as needed. We make them full enough to handle the concaveness that comes after a mastectomy or lumpectomy.
As I was going through my expansion, every week I would just pull out more stuffing. That kept me balanced with my natural side. After I had surgery, and the implant was put in, over time my natural side continued to droop. My new and improved implant side stayed perky, and I became unbalanced again. So I resurrected my knitted knocker, and took out most of the stuffing, but I left a little on the bottom to give me more volume.
I’m Taking Charge: Do they fit in any bra, and when can a women begin to wear a Knitted Knocker?
Barbara: It can be worn in a regular bra. It doesn’t require a prosthetic bra. It is a great temporary solution, because it can be worn sooner than the traditional breast prostheses, which you need to order, have a special fitting, and it takes time for insurance. It is my understanding they cost between $300 and $800, and they can’t be worn for six weeks. My doctor told me I could wear the Knitted Knocker as soon as my stitches came out. But we don’t practice medicine, and that’s between a woman and her doctor.
We have heard from women who had their mastectomy 10 years ago and had given up on their prostheses, because they were so uncomfortable and irritating on those sensitive scars or the weight was just too much. Now they are totally thrilled with the Knitted Knockers.
I’m Taking Charge: How are you getting the word out on Knitted Knockers?
Barbara: We work very hard to get the word out to women who can use them, because there are 1.2 million women living in the U.S. right now that have had a mastectomy and not been reconstructed. We also are all over the world. We never turn anyone down. There is a phenomenal number of women that can use Knitted Knockers, and the way we reach out to women is through social media. Social media is huge for us.
We recently had an article on Business Insider, a video, that was viewed 969,000 times in the last month. Our Facebook reach is about 60,000 a month. We partner with doctors’ offices and medical clinics around the country and provide Knitted Knockers, brochures and business cards. We go and speak at events like Relay for Life. We are listed as a resource for BreastCancer.org and the American Cancer Society. We reach out to every avenue that we can, and are always looking for a way to get the word out.
I’m Taking Charge: How many people do you have knitting?
Barbara: We have also worked very hard to generate the volunteer knitters who make Knitted Knockers, because it doesn’t do any good to have a great demand for these and no way to fill them. There are thousands of knitters and crocheters. We have 110 groups registered with us that use our patterns and our recommended yarns. We are very particular with our groups and the yarn they use, because they’re worn against sensitive skin. Plus, they need to be durable.
There are guilds all around the world in the fiber arts industry that are so amazing and so loving and caring. Some of those guilds have like 600 members. They love to embrace charity projects.
I’m Taking Charge: Do you have any idea how many Knitted Knockers have been made and sent to breast cancer survivors?
Barbara: We don’t, because one of the things we have done is to work very hard through knittedknockers.org to inspire and equip knitters to provide to their own communities. So when a group registers with us, we support them in a couple ways. First, we tell them if they knit these and send them to us, we will stuff them and fill the orders that come through our website. That’s one way they can support us. We do know how many Knitted Knockers come to us, but what we don’t know is the second way we support them. Those are the ones they provide directly to their own community, doctors and medical centers. We know it’s easily over 20,000, but we can’t verify the number. Our group started in 2011, and in the last 18 months we have grown from a thousand a year to this year we are doing 1,000 a month that are sent out directly from our website. The demand is huge, and so far we are meeting it.
I’m Taking Charge: Do you provide the yarn to the knitters, or do they supply their own?
Barbara: The volunteers provide their own yarn. There is specific yarn. We love to partner with yarn shops. Many times yarn shops will provide a discount on our recommended yarn if it’s for Knitted Knockers. The cost of the yarn, our recommended yarns, is about two dollars a knocker. Phyllis, the one who made my knocker, has made over 400 knockers. There are many people who have made over a hundred for us, but we also have people who have made two or three.
I’m Taking Charge: Does Knitted Knockers also covers the cost of shipping the knockers?
Barbara: It cost us roughly $10 a pair to send out. We do send them out free. I really want to emphasize we are knittedknockers.org and that any women can come to our site and request their free Knitted Knockers. They can request a size or color and order one or a pair. We have 3 color choices: the neutral color palette, bright colors or dark colors. We try to send them out in about two weeks. Again they are free, but there is an opportunity to donate to those that are able. We appreciate all donations, because our postage costs alone are over $1,000 a month now. That doesn’t count all the packaging and stuffing.
I’m Taking Charge: Since you’re a non-profit, where does the money come from to cover your expenses?
Barbara: The vast majority of donations come from individuals. That is it really. We are squeaking by, and I have injected a bit of my own money. But at this point, since it has grown, we are always looking for opportunities to raise money.
I’m Taking Charge: Where is Knitted Knockers located?
Barbara: We work out of our local yarn shop, Apple Yarn, in Bellingham, Washington. The shop has a community room there, and graciously allows us to meet there every Wednesday from 10 to noon. There are between 15 and 20 volunteers that show up, each to help process the Knitted Knockers that come in, tweak the knockers we receive, and fill the orders. We figure it’s about 1600 volunteer hours a month. That’s pretty phenomenal.
This week we had 170 requests: 95 we will be filling, 75 we were able to forward to groups in their state. Twenty of our groups have agreed to provide knockers for the whole state. So when we get an order in from California, for instance, we will forward that order to our California group to fill. The beauty of that is knitters in California are making knockers for women who are in California. We love that.
I’m Taking Charge: Do you have a goal for your organization?
Barbara: Our mission is to connect volunteer knitters with breast cancer survivors to create free knockers. We do that by inspiring and equipping the knitters to provide for their own community. So our goal is to have the ability to provide knitted knockers to anyone who wants one. This has meant everything to me. I was at my deepest lowest point when going through breast cancer. The lowest for me was when I wanted to feel normal. I didn’t want to wear an old lady bra. I wanted to look normal, get back to work and engage in life. I also wanted to focus on others and not on myself. A Knitted Knocker did all that for me. It changed everything for me.
To volunteer, donate, or order a pair of the Knitted Knockers breast prosthetic, go to Barbara’s site: knittedknockers.org.
Here are some recent comments that Knitted Knockers has received about their breast prosthetics:
While at the Oncologist’s office today, they showed me these Knockers! What a delight! Made my spirits rise to new heights today! 4-12-16
These are the best prostheses ever! I have worn my original pair for 2 years. I just received 2 more pairs from your group. Thank you for all you do!
Love love love mine! They are so inspirational I get emotional talking about them. Thank you so much. God Bless! 4-4-16
I have tried to wear others and so heavy have been flat for 8 yrs and am excited to feel like a woman and for clothes to fit. I read this site and cried. Thank you in advance 3-8-16
These are for my wife. She is struggling after surgery and I would like something to help her understand that I still love her and find her GORGEOUS! Maybe this will help her feel the same about herself 3-8-16
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