Jay has lymphedema. She was born with it, which is known as Milroy's Disease for the curious or bored. I don't talk about it much because it just is what it is and I have a separate blog devoted to the topic at lymphbaby, that I update even less frequently than this one, but I'm peeved, so here goes.
WHY is it so hard to find ~anything~ in this country that is outside the accepted norm of sizes? A few statistics to help my case:
- The incidence of lymphedema in the United States is estimated at 2.5 million, yet more than 100 million people are affected worldwide. (Source)
- If you have developed lymphoedema, you are not alone; it is estimated that well over 100,000 men, women and children in the UK are living with the condition. (Source)
- Geographically speaking, the US is 40 times the size of the UK. (Source)
- The US has 25 times as many lymphedema sufferers as the UK (per data above).
In her case the swelling on the top of her foot begins just at the base of her toes and goes to the front of her ankle as well as to the sides and, less severely, to the bottoms of her feet and toes.
I say this because while shopping for 2-3x wide shoes is hard enough in this country, wide is not her only issue. Until I started ordering from a site in the UK a couple of years ago she never owned a pair of properly fitting shoes. In order to get something that would cover the height of the top of her foot (the dorsum---I had to learn all this stuff so I can sound erudite when I explain it to each new specialist) we've had to buy shoes that were 1-2x wide and anywhere from 1/2 to 2 1/2 sizes too big/long so she wouldn't have to go barefoot, since, well, you can't go to school barefoot...
What about custom/prescription footwear?
I tried. When she was about 18 months old I asked her pediatrician (who is, btw, ~awesome~) if we could get a scrip for custom shoes, like they do for kids who need specialized orthopedic shoes. She was uncomfortable writing the Rx since it's a bit wide of her field and recommended we seek a pediatric orthopedist. So I did.
It's been 7+ years and I am STILL angry about that day. I found a specialist, I waited months to get her in, I paid the ridiculous specialist co-pay (2x the norm) and we saw the doctor. A doctor who couldn't seem to wrap his brain around the fact that I wanted a scrip for custom shoes. I needed the prescription because (a) I don't know who to call for custom shoes and (b) custom footwear is waaaay outside our budget.
He was fascinated by her feet. He'd never seen anything like it. We were there three hours and he brought every doctor in the practice, every nurse, and even a couple of pharma and orthopedic supplier reps who were making calls into the exam room to see her feet.
Then refused to write the scrip because, and this is a quote, "I don't see how I can help you. I'm an orthopedist."
Fast forward through 4-5 years of over-sized poor fitting shoes that were still a trial to find. Someone on one of the LE listservs I'm a member of sent me a godsend of a URL: www.cosyfeet.com. Go check it out. You can shop for shoes by size (UK shoe sizing being one of many thing on my long list of things I've had to learn since she was diagnosed at about 6 weeks old), by style, by medical condition you need to accommodate.
And I've bought at least one pair of shoes for her from them every year since then.
Then the economy tanked. Last pair I ordered was in January of this year, when the pound was still pretty weak, too. It's not, now, and I discovered Sunday that while I can order her shoes, I'm going to have to budget for it a bit more since the dollar is weak to the pound just now.
Great. I couldn't justify spending 2+ weeks of daycare on a single pair of shoes without at least trying to find a resource in the U.S. Which pretty much ate the rest of my Sunday afternoon and early evening.
Here are some of the things I (fruitlessly) Googled:
- lymphedema shoes U.S.
- extra extra wide shoes
- specialty shoes for medical conditions
- lymphedema shoes
Still nada, but ran into a few crappy shoe sites that didn't even let me search by size. What is the point of finding a perfect pair of shoes only to discover it is not made in the size I need---unlike clothing, one cannot diet to get a smaller shoe size (for the most part).
Okay, I will grant you that of the estimated 2.5 million LE sufferers in the US, over half of them are cancer patients, predominantly breast cancer survivors. Meaning their ARMS are affected, not their feet. But, even at 1/3 of 2.5 million that's still a captive audience of 833,333 people in desperate need of a product to fill their need. 8x the total number of people in the UK who have LE. And ~no one~ can step up.
I wish to heaven I had the skills to be a shoe designer. I'd make a fortune (and do it without charging one!).