A 13-year-old had chest pains. A rare disease meant he was "close to sudden cardiac death."
"He said, 'My chest hurts,'" Clayborne recalled. "I was like, 'What do you mean your chest hurts?'"
The words were terrifying to Clayborne, who had a long history of cardiac issues. She gave birth to Micah in 2010. He was born premature, at 34 weeks, and during the delivery, Clayborne had a heart attack. She spent weeks in the cardiac intensive care unit and was diagnosed with peripartum cardiomyopathy, a rare form of heart failure that happens at the end of pregnancy or shortly after giving birth. During Micah's childhood, her heart continued to weaken. She had a pacemaker and defibrillator implanted to maintain her heart rhythm, and a mechanical LVAD pump to help her heart circulate blood. In 2018, she had a heart transplant.
Because of Clayborne's history, Micah had seen a cardiologist regularly as a child. There were never any issues. But Clayborne knew the chest pains could be a warning sign, and she brought him to a cardiologist at 10:30 a.m. the next day. By 11:15 a.m., Micah had been admitted to the cardiac ICU at Children's Medical Center Dallas.
Tests found Micah's heart was functioning at just 7% and that he was "very close to sudden cardiac death," Clayborne said. Just like his mom had, Micah needed a pacemaker and defibrillator. He would eventually need a transplant, too.
"When they tell you that you are going to die, you're like, 'OK, I can fight this,' but when they tell you your child is going to die, that's a whole different set of emotions. Not only are you helpless, you are hopeless," Clayborne said. "And as a person who went through it, knowing what his future looks like, knowing the surgeries that are coming up and what the recovery from those is like, is incredibly difficult to try to explain to your child. It was devastating."
An incredibly rare diagnosis
Doctors tested Micah to figure out why a previously healthy teen would be having such severe heart problems. They found that he had Danon disease, a rare genetic condition that affects only about 300 families worldwide. Further testing found that Clayborne also had the condition. The Claybornes are the only documented African-American patients with the disease.
Mutations in the LAMP2 gene cause Danon disease, said Dr. Rakesh Singh, the medical director of the pediatric heart failure and transplantation program at NYU Langone's Hassenfeld Children's Hospital. The gene creates a protein that gets rid of excess waste in the body's cells. The mutation interrupts that process. The inability to get rid of cellular waste causes the heart muscle to thicken, causing the organ to work less efficiently and creating a form of heart failure that "doesn't respond well to medications," Singh said.
"It's not uncommon for these children to require heart transplantations in their 20s," Singh explained. Danon disease patients may also have neurological issues or eye problems.
The disease is more common in male patients than female ones, Singh said. Male patients are more likely to have severe disease.
A long-awaited transplant
After Micah had the pacemaker and defibrillator implanted, he was put on the national waiting list for a heart transplant. In October 2024, Clayborne received the call they had been waiting for. Micah was playing video games when she gave him the news.
"I was like 'Yes, this is it, I get a second chance,'" Micah said.
The family headed back to the Children's Medical Center Dallas. As Micah underwent surgery, Clayborne waited nervously. She only became more panicked when she received an update from the transplant team: Micah's heart had been removed, but the new donor heart was still several minutes away.
"I am in my brain freaking out. I got out of the waiting room, and I was like, 'I just have to go take a walk.' I wasn't going anywhere specific," Clayborne recalled.
She stepped onto the nearest elevator, then held the doors for a man. She saw he was wheeling a container holding a donor heart.
"I looked down and I said 'I think that's my son's heart,'" Clayborne said. "He just kind of smiled at me. Then the doors opened, and he went, fast as he could, straight into the OR. It was this incredibly surreal moment."
Building a unique support system
After the delivery hiccup, Micah's heart transplant went smoothly. About nine months after the surgery, Micah, now 14, is doing well. He's back in school and receiving regular follow-up care — and focusing on a new passion project.
While Micah was awaiting transplant, he had realized how few resources there were for teenagers in his circumstances. There were support groups for parents. There were playgroups for younger kids. Clayborne even asked hospital staff if there were virtual meetings he could join.
"I felt really bad going back in and saying 'Micah, there is no support for you,'" Clayborne said. "And his response was 'I guess we gotta make one.'"
In January 2025, Micah and Clayborne launched Transplant Teenz, a virtual community aimed at connecting teenagers nationwide while they wait for organ transplants. The non-profit group hosts group meetings and online events and shares educational materials. Dozens have already joined. Micah said he hopes to have 100 participants by the end of the year.
"Being a teenager is when you're starting to become an adult, and things become more stressful," Micah said. "Transplant just makes everything more stressful without a support group around you. My hope is to give teens a group they can go to that I had never had."
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Medscape
5 minutes ago
- Medscape
Smartwatches Won't Fix the Burnout Crisis in Medicine
This transcript has been edited for clarity. Welcome to Impact Factor , your weekly dose of commentary on a new medical study. I'm Dr F. Perry Wilson from the Yale School of Medicine. Burnout is a huge problem across multiple professions in the United States. Grades K-12 teachers have about a 50% burnout rate. So do people in quality assurance. But I was unable to find a profession with a higher rate of burnout, or a higher potential for harm from burnout, than — you guessed it — physicians. A 2022 survey found that 63% of physicians had burnout, rates that have been among the highest of all US workers since 2011. And this is a huge problem. When docs are burned out, they are more likely to commit medical errors, be named in malpractice suits, and even exhibit racial biases. Administrators of health systems have taken notice. But their solutions have often been criticized as tone-deaf. 'Mandatory burnout workshops' are not helping anyone's burnout, I promise you. So I was a bit concerned by a study that came out this week that offered a relatively simple solution to what is a really complex problem. Can you actually cut burnout in half by giving physicians a smartwatch? Before we dig into the study, let's talk about burnout a little bit. I think there's sort of a Potter Stewart definition of burnout: 'I know it when I see it.' But the real description comes from Christina Maslach, who characterized it as a psychological syndrome brought about by chronic occupational stress characterized by emotional exhaustion, depersonalization or cynicism, and a reduced sense of personal accomplishment. Sound familiar? I know. It's not uncommon. And it goes without saying that depersonalization and cynicism are just terrible traits to have in a doctor. It's not just workload that leads to burnout, according to most psychologists; it's this combination of workload and a feeling that you don't have autonomy. That you are not the master of your fate or the captain of your soul. Big issues. So how is a smartwatch supposed to help? Well, the idea isn't crazy. Smartwatches are miniature biofeedback devices. They tell you about your heart rate, your step count, how much you slept. Those little data points can lead to some real behavior change. This is anecdotal, but multiple people have told me they've cut back on drinking alcohol because they noticed that their smartwatch-reported sleep quality is worse on nights that they drink. Researchers at the Mayo Clinic and University of Colorado thought that maybe giving smartwatches to physicians would lead them to make small lifestyle changes, like getting more sleep, that would reduce this problem of burnout. Here's how the trial worked, as reported in JAMA Network Open . One hundred and eighty-four physicians — about half attendings, half residents and fellows, and about 60% female — were randomized to two groups. One group got a smartwatch, specifically the Venu 2 Plus from Garmin, to wear for 6 months. The other group got nothing. Well, to be fair, they got a smartwatch as well — just after a 6-month wait so the team would have 6 months of high-quality comparison data. At the beginning of the study and several times over those 6 months, the participants took surveys about their mental health: a resilience survey, a quality-of-life survey, a depression survey, a stress survey, a sleep survey and, importantly, a burnout survey. At baseline, 50% of people in the intervention arm were burned out and 43% were burned out in the control arm. After 6 months, burnout dropped to 41% in the intervention arm and rose to 51% in the control arm. The difference here was not technically statistically significant, but after accounting for the fact that burnout was higher at baseline in the intervention group, the team concluded that the odds of burnout were about 50% lower after 6 months of the smartwatch intervention. I know statistics can get confusing in situations like this. I think sometimes it helps just to look at the graph and make your own judgment: Burnout down a bit with a smartwatch, up a bit without a smartwatch. Fine. There was also about a 20% improvement in resilience scores, while there were no differences in quality of life, depression, or stress scores. So… is that it? Have we solved this problem plaguing all of healthcare and multiple other industries across the United States? Smartwatches? My fear is that some C-suite execs will look at this study and think they can cut burnout rates in half by sending a bunch of smartwatches around. Maybe it seems obvious to you that it wouldn't actually work, but let's break down a bit how the results of this study may be somewhat skewed. The most important thing to note is that this study was not blinded. The people in the smartwatch group knew they were in the smartwatch group because… they were wearing the smartwatch. It's hard to imagine a way to blind this study, to be fair, although I suppose you could give everyone a smartwatch but half the people get fake data or something. But once you know that you are in the intervention group, biases in your answers creep in. Just imagine you're in the study. At baseline, you take these surveys, then they give you a smartwatch, and 6 months later you take a bunch of surveys again. Maybe you skew your answers a bit, even unconsciously, because you like the people running the study or science in general, or maybe even smartwatches. The authors acknowledge this but minimize it, suggesting that if this 'social desirability bias' was present, it should improve scores across all the surveys. I mean, okay, but to be honest, the score differences are pretty marginal across the board, so I don't find that argument very compelling. The real issue here is that this study puts the locus of control in the wrong place, as many burnout interventions do. It puts the responsibility for burnout on the shoulders of the burned-out physicians. It suggests we can tolerate our jobs better if we just change our outlook: Sleep more, meditate more, live in the moment, do tai chi, etc. But I would argue that the problem with burnout is not in the mind of the physician; the problem is the system in which we work. More than 75% of physicians in the United States today are employed by hospitals, health systems, or other corporate entities. The private-practice model is rapidly dying and the physician workforce is learning what it means to be labor instead of management. They are feeling what it is like to be exploited, for lack of a better word — pushed to see more patients in less time, pushed to generate more RVUs, pushed to work weekends and nights to increase margins. It's not what they signed up for. The problem of burnout is from the system. If you want to cut rates in half, you don't send docs a smartwatch. You give them more time to see fewer patients. You change the insurance system that leaves us on the phone arguing for prior authorization for hours at a time. And if that affects the bottom line of the health system, you look for cuts in the — and this is true — 10 administrators for each physician in the US. Look, I love my smartwatch. It helps me delete emails while I'm waiting for the elevator. But the solution to physician burnout is not here. It's out there.
Yahoo
33 minutes ago
- Yahoo
TNF Pharmaceuticals Strengthens Financial Position for Growth and Value Creation
Transforms present balance sheet with significant reduction in liabilities Largest shareholder is long-term strategic investor NEW YORK, August 19, 2025--(BUSINESS WIRE)--TNF Pharmaceuticals, Inc. (Nasdaq: TNFA) ("TNF" or the "Company"), a clinical stage biopharmaceutical company committed to developing novel therapies for autoimmune and inflammatory conditions, today announced that is has significantly improved its financial position over the past 5 months through a material reduction in liabilities, while maintaining total assets of over $17 million as of June 30, 2025. "The recent significant improvement in our financial position gives TNF a stronger platform for growth opportunities and taking advantage of shareholder value creation opportunities," said TNF President and Chief Medical Officer, Mitchell Glass, M.D. "We are pleased to have the continued support of our largest investors, and look forward to updating investors on TNF's business developments in the near future, including our ongoing collaboration with Renova on GLP-induced inflammation and muscle damage." The improvements in the Company's financial position will be reflected in future financial statements of the Company. About TNF Pharmaceuticals, Inc. TNF Pharmaceuticals, Inc. (Nasdaq: TNFA), a clinical stage pharmaceutical company committed to extending healthy lifespan, is focused on developing two novel therapeutic platforms that treat the causes of disease rather than only addressing the symptoms. Isomyosamine is a drug platform based on a clinical stage small molecule that regulates the immune system to control TNF-α, which drives chronic inflammation, and other pro-inflammatory cell signaling cytokines. Isomyosamine is being developed to treat diseases and disorders marked by acute or chronic inflammation. The Company's second drug platform, Supera-CBD, is being developed to treat chronic pain, addiction and epilepsy. Supera-CBD is a novel synthetic derivative of cannabidiol (CBD) and is being developed to address and improve upon the rapidly growing CBD market, which includes both FDA approved drugs and CBD products not currently regulated as drugs. For more information, visit Cautionary Statement Regarding Forward-Looking Statements This press release may contain forward-looking statements. These forward-looking statements involve known and unknown risks, uncertainties and other factors which may cause actual results, performance or achievements to be materially different from any expected future results, performance, or achievements. Forward-looking statements speak only as of the date they are made and neither the Company nor its affiliates assume any duty to update forward-looking statements. Words such as "anticipate," "believe," "could," "estimate," "expect," "may," "plan," "will," "would'' and other similar expressions are intended to identify these forward-looking statements. Important factors that could cause actual results to differ materially from those indicated by such forward-looking statements include, without limitation: unanticipated financial setbacks, the Company needing to pursue financing options that could adversely impact our liabilities due to adverse market conditions, the Company's ability to maintain compliance with the Nasdaq Stock Market's listing standards; the timing of, and the Company's ability to, obtain and maintain regulatory approvals for clinical trials of the Company's pharmaceutical candidates; the timing and results of the Company's planned clinical trials for its pharmaceutical candidates; the amount of funds the Company requires for its pharmaceutical candidates; increased levels of competition; changes in political, economic or regulatory conditions generally and in the markets in which the Company operates; the Company's ability to retain and attract senior management and other key employees; the Company's ability to quickly and effectively respond to new technological developments; and the Company's ability to protect its trade secrets or other proprietary rights, operate without infringing upon the proprietary rights of others and prevent others from infringing on the Company's proprietary rights. A discussion of these and other factors with respect to the Company is set forth in the Company's Annual Report on Form 10-K for the year ended December 31, 2024, filed by the Company on April 11, 2025, and subsequent reports that the Company files with the Securities and Exchange Commission. Forward-looking statements speak only as of the date they are made, and the Company disclaims any intention or obligation to revise any forward-looking statements, whether as a result of new information, future events or otherwise. View source version on Contacts Investor Contact: Sign in to access your portfolio
CBS News
36 minutes ago
- CBS News
Michigan lawmakers call on HHS to explain withholding funds for disability advocate groups
A group of Michigan lawmakers is calling on the Department of Health and Human Services to explain why it took back more than $130,000 in funds that were earmarked for legal support for those with disabilities. Whether it's dealing with insurance or getting legal support for abuse, neglect, or human rights cases, these lawmakers say those with disabilities could be on their own if these funds don't come through. "Attacks like this take us back and repeal so much of the progress that we've made," said Democratic U.S. Rep. Hillary Scholten. Scholten is one of those representatives who say they're looking to hold HHS accountable for withholding these funds. The organization receiving them, Disability Rights Michigan, says in part, "The pullback of these funds threatens our ability to investigate abuse and neglect, ensure safe and appropriate discharges, and advocate for children and adults who depend on Disability Rights Michigan for legal protections." Scholten says withholding funds defeats the purpose of having a resource like this. "A program like that can only continue to exist if we have a full pot of resources available to help individuals with these severe disabilities," she said. Fellow Democratic U.S. Rep. Shri Thanedar also signed the letter, which raised several questions about why the funds were rescinded, when and if they can expect them to be awarded, and why the distribution changed from a lump sum amount to being released as installments. "I signed onto that letter so we can get some answers on the programs being gutted and demand those funds be released for the sake of every American," Thanedar said. These lawmakers are giving HHS 30 days to respond to their questions before they take further action. CBS News Detroit reached out to HHS for comment.
