After her right foot became infected and riddled with gangrene last summer, Jemia Keshwani, 40, was terrified that it would need to be amputated.
Keshwani is a former warehouse security guard from LaGrange, Georgia, and she had spent quite a lot of her career on her feet. She was first diagnosed with type 2 diabetes 25 years ago, just after her father died while in a diabetic coma. Like many people with the “silent disease”, the condition marked by dangerously high sugar in the blood, her father did not realize he had diabetes until he was hospitalized. Several years ago, a friend of Keshwani’s with diabetes underwent a below-the-knee amputation. This was both a disease and a procedure with which she was dreadfully familiar.
“In my head I was scared,” she said. “I didn’t want my foot cut off. I am too young to lose a limb.”
About 38 million Americans have diabetes, and each year a staggering 154,000 Americans will suffer amputations, roughly 80% of which will be the result of complications from diabetes. Their life expectancy following this procedure is five years; the probability of a second amputation is up to 35%. By comparison, a total of 1,700 American soldiers had limbs removed since 2002 due to injuries sustained during combat tours in Iraq and Afghanistan.
Amputations become necessary when diabetes causes excess sugar in the blood to block circulation in organs with small blood vessels such as kidneys, eyes and feet. In the feet, lack of blood circulation can lead to neuropathy, or numbness. Numbness can mean people may not realize their feet might have cuts or other wounds. Poor circulation also impedes the body’s ability to heal wounds. When these wounds are undetected and untreated, they become infected, which can lead to life-threatening gangrene and infection of the bone.
“It is a perfect storm of poor health and lack of medical guidance,” says Dr Dean Schillinger, founder of the UCSF Center for Vulnerable Populations, whose mission is to advance health in low-income communities. “A person with a 4in foot ulcer often doesn’t realize they need to not put weight on this foot so it can heal. Often, they’re working on their feet, they’re taking care of kids. They just can’t put their feet up for four to six weeks. And then the ulcer gets worse.”
Statistics bear this out. Less affluent Americans with diabetes are more four times more likely to have limbs amputated than affluent Americans with diabetes. African Americans are a mind-blowing four times as likely to suffer amputations than white Americans, and three times as likely to suffer from peripheral artery disease (PAD), the diabetes-related condition that impedes blood flow to the limbs.
Amputations, Schillinger explains, are what are known as a “mega-disparity” in healthcare deliverance. “It is perhaps the most stark disparity in black versus white health in America.”
By last September, things looked dire for Keshwani. She had already suffered a coma, and been in and out of hospitals several times. Blood was not flowing to her feet. And because her feet were numb, she did not at first realize that a dime-sized ulcer was developing on the bottom of her foot. Left untreated, gangrene set in, and then life-threatening sepsis. A foot amputation appeared inevitable.
Diabetes has been a constant presence in Keshwani’s life. “My dad, my sister and both of my grandmas have diabetes,” she says. “My dad, as a Black man, never went to the hospital. He never wanted to go to the doctors. My brothers and my cousins don’t want to go to the hospital … maybe they think something bad is going to happen.”
That month, she met Dr Ravi Kamepalli, one of the few infectious disease and obesity physicians in the country who include a low-carbohydrate diet in their treatments of diabetic wounds. He sent her to a colleague for vascular work that increased blood supply in the foot. He cleaned out the foot of gangrene. And he explained to her how her high-carbohydrate diet spiked her blood sugars, which not only were the original source of her problem, but also made it more difficult for her wounds to heal.
She stripped sugar and carbohydrates from her diet and almost immediately saw results. As her blood sugar numbers began to drop, she had better blood circulation. “I didn’t understand you could change things around if you eat the right foods,” she said. “I needed to help myself.”
Imagine if each year, nearly 150,000 white, male corporate executives suffered amputations of their feet or toes as the result of type 2 diabetes – and that in virtually every case, the operation would have been avoidable had their doctors kept them on a diet low in carbohydrates and they’d had frequent self-examinations of the feet. What would our collective response be? Might there be congressional hearings looking into this obvious case of societal neglect? Would the National Institutes of Health fund study after study exploring what educational and dietary reforms were needed to help prevent these men from undergoing the painful, debilitating, life-changing and life-threatening procedure?
Type 2 diabetes is a deadly epidemic afflicting 38 million Americans that is largely reversible with a low-carbohydrate diet. The lack of public urgency surrounding this public health catastrophe is in some measure the result of the nation’s most powerful diabetes advocacy group, the American Diabetes Association (ADA), which works hand in glove with its big food, pharmaceutical and medical technology donors, all of whom feed off the $400bn Americans spend annually on diabetes-related hospital stays, doctor visits, insulin injections, glucose-lowering drugs, insulin pumps, glucose monitors and other diabetes-related paraphernalia.
Most mind-boggling, the ADA has entered into financial and marketing partnerships with companies such as Splenda and the Idaho Potato Commission, both of whom sell foods that have been found to increase the probability of people contracting diabetes. As with other aspects of health in the US, big money often trumps sound healthcare practice.
People with diabetes who have foot amputations live at the other end of the diabetes periscope. Their smiling faces are not found in the ADA annual reports. They are not featured in the endless TV commercials promoting the latest glucose-lowering drug. Their struggles are interwoven with our other challenges of poverty, race and inadequate healthcare. Amputees in the US are close to invisible.
Over the past several months, I interviewed more than three dozen amputees, clinicians and researchers about this procedure. Among amputees, I found little bitterness or self-pity, but much self-blaming and self-shaming, as though their medical conditions were their own fault rather than the result of an inequitable healthcare system that deprives patients of information about their own care and diet. Many were bravely able to live relatively normal lives after their procedure. I also spoke with heroic doctors who have made it their life’s work to salvage their patients’ limbs, or gently guide them through the rehabilitation process.
“I was hard-headed and in denial,” says George Woods, 65, a Los Angeles dietetic technician, and former food service supervisor and juvenile corrections officer who was first diagnosed with type 2 diabetes 20 years ago. He suffered a double amputation in the wake of the Covid pandemic. A former dietician, he was prescribed insulin and various glucose-lowering drugs over the years, while pretty much living life what he calls “the George Woods way”.
“I am stubborn,” he says. “I drank and smoked cigars. I didn’t want to wear those ugly shoes they gave me.” Today, Woods lives by himself, though he receives frequent support from his children and his ex-wife, who lives close by. He plays basketball on his two prosthetic legs. “I stay positive. Sometimes I don’t accept help. I dance, I cook, I walk up and down 19 steps.”
From time to time, he returns to his old neighborhood. “When people see me in a wheelchair in South Central Los Angeles, the first thing many of them ask is ‘Did you get shot?’” he says. “The truth of it is, many brothers don’t like going to the doctor. They just don’t like doctors.”
Like other aspects of healthcare, such as heart surgery or cancer care, American medicine has made tremendous strides in treatment, but still lags in prevention.
“By the time patients come into the emergency room it is sometimes too late,” said Dr David G Armstrong, a professor of surgery at the Keck School of Medicine at the University of Southern California. “But if we can see them sooner in the clinic, the vast majority of these cases are preventable.”
Armstrong is one of the country’s leading diabetic foot researchers and clinicians, and has developed a number of multidisciplinary surgical interventions that can reduce the need to remove a patient’s limb. He was recruited to his current job, he said, “to eliminate amputations for the next generation. It sounds quixotic, but with nutrition on the front end, and all the efforts to put these teams together on the back end … I believe it is possible.”
He has published more than 600 papers on diabetic amputation, and is founding co-editor of the ADA manual Clinical Care of the Diabetic Foot. He is considered an innovator when it comes to using a multidisciplinary approach once infections afflict the foot. He treated George Woods, who laments: “I met Dr Armstrong only after my disease had really developed.”
As a podiatric surgeon, Armstrong’s focus is on improving blood flow, and treating infections in order to avoid surgery. Diet does not figure strongly in his tool kit. “The short answer is that it is probably true that getting patients to improve their diet and eliminate carbohydrates would slow the rate of all this,” he said, and then paused. “I would actually give a redundant organ for that.”
Tracy Alverson is a 69-year-old workers’ comp specialist living in Aurora, Colorado, who had a below-the-knee amputation in 2016. She was diagnosed with type 2 diabetes in 2006, and was, in her words, “an infection magnet”, who kept getting sores on her feet and toes. She attributes a lot of her issues to her “junk food” diet.
“I know it’s what I put in my mouth that caused me to have issues,” she said. “My podiatrist would ask me, ‘How is your blood sugar?’ and then move on to the next question. But I wish I’d had a ‘come to Jesus’ conversation with a doctor who said, ‘You will lose your leg if you stay on the path you are on.’ I’m not blaming anybody; I just wish there was someone working with me.”
She had six surgeries leading up to her amputation, until she was sent to an orthopedic surgeon on a Thursday. A few days later, she was booked for an amputation surgery. Today, Alverson is a certified peer counselor for recent amputees. “It was a number of years before I let myself grieve for my leg. Finally I went to a grieving class. Everyone said, ‘I lost my job’ or ‘I miss my mother.’ I said, ‘Hey, I miss my leg!’”
Most recent amputees, she said, want to live as normal lives as possible, and not be judged. They tend to seek one another out. She notices that people with amputations are still largely invisible in society. “There are 2.1 million people with amputations. Where are they? I don’t see them when I go to baseball games or the grocery.”
I also found a group on Facebook called the Diabetic Amputee Support Group, where amputees and their families search for answers and offer emotional support. Some of the stories are wrenching, and underscore the loneliness and bewilderment that frequently follows the operation.
There is little conversation about diet on the site. Rather, the members lean on one another for emotional support, as each of them tries to cope with their new lives.
“I miss my leg,” an anonymous poster wrote. “I wonder if it misses me.”
Thankfully, it appears that Keshwani will avoid the dire outcome she had earlier feared. By restricting carbohydrates from her diet, she was able to get her hemoglobin A1C from a sky-high 14.9 down to 7 – still above average, but out of the danger zone. She got off her medications, and lost 150lb, she said. She credits Kamepalli with empowering her to take control of her health.
“It took me 20 years to understand the whole problem of wounds and healing are the problem of metabolic health,” Kamepalli said. “For a wound to heal, it takes the white blood cells to do their job, which is to help take out the infection. The sugars feed the bacteria.”
Darryl Johnson, 63, is a professional singer whose greatest thrill was once singing My Girl on stage with the Temptations in Raleigh, North Carolina. He only learned he had type 2 diabetes after his foot was already amputated in 2022. “It was an infection of the foot,” he said. “I had a callous. I started picking on it.” Soon, the wound started deteriorating. “I said my foot’s about to be gone.” Within three and a half weeks, it was. And now Johnson is learning to cope without his leg. “We couldn’t get any doctors appointments. I blame Covid.”
Johnson currently has an edema blister on the other foot, but says he is not concerned that he is at risk of a second amputation. As for diet, he too recognizes that “it’s the sugar we put in our body.” But while he still struggles to keep his blood sugar levels low, he says he lives by the motto of a cousin who had diabetes: “You can have anything you want, you just can’t have it all.”
In the meantime, Johnson continues to acclimate to his new reality, even while he fights the infection on his foot. Living by himself, he said, he does not feel slowed down. “I have my wheelchair, and I have the rugs on my floor,” he says. “Why would I let this kill my life? The disease has to adapt to me, not me to it.”
I was diagnosed with type 2 diabetes in 2021 and reversed my diabetes by adopting a low-carb diet. I now understand that my comfortable circumstances made it easier to embark on my course of action than it might be for others.
When I recently spoke to Schillinger, of the UCSF Center for Vulnerable Populations, he underscored the significance of class distinctions in the delivery of healthcare in our country.
“You probably were diagnosed early, and so your diabetes was gotten under control fairly quickly,” he told me. “You probably are not exposed to second-hand smoke, a potent risk factor. And you are likely well-educated about foot inspection, and have decent footwear. And were you to have an ulcer you would seek care promptly and not need to wait five weeks to see a podiatrist. And if you had an ulcer you would probably have a job that gives you the luxury of staying off your foot.”
Since changing her diet, Keshwani’s situation is still a work in progress. She recently developed Charcot foot, a neuropathy-related condition that weakens the bone structure of the foot. She currently wears a brace, she says, that holds her ankle in place and keeps the foot from collapsing. But she has lost 120lb. And she no longer shoots insulin four times a day into her belly.
Is Keshwani’s treatment a template for how to treat diabetic foot ulcers? I would argue that is is. Others would say further study is needed. In any case, her experience, and the experiences of countless others should not be ignored. What is fairly clear is that when her diet changed, her blood sugar fell. And when her blood sugar fell, her circulation improved.
“When we treat patients with diabetes, we need to understand that we are all food addicts,” Kamepalli said. “Rather than give lip service to diet, we need to have grounded discussions with our patients about how a high-carbohydrates-rate diet figures into disease, especially diabetes.”
As challenging as that might sound, Keshwani says her outlook on life has dramatically improved, and the risk of the dreaded foot amputation is behind her. “You know how sometimes you feel helpless?” she asked. “Now I don’t feel that way.”
Neil Barsky, a former Wall Street Journal reporter and investment manager, is the founder of the Marshall Project
Shortly after the Guardian interviewed George Woods, he passed away from diabetes-related complications
