Health
Voices of Crohn’s Disease
Crohn’s hit Erron Maxey suddenly in 2009, about halfway into his 18-year career playing pro basketball abroad. A bout of food poisoning in Argentina seemed to trigger it.
“Actually, the whole team got food poisoning,” says Maxey, who also has played in Australia, Finland, China, and other countries. But only his symptoms seemed to linger and worsen.
Later that year, Maxey had his first surgery in Uruguay to repair infected sores in his intestines and to remove fistulas — tunnel-like passageways that reroute waste to the wrong places.
But it took 5 more years and several more surgeries before doctors officially diagnosed Maxey with Crohn’s.
That was a difficult time for Maxey. “I’d have upset stomach, chronic diarrhea, constant pain.”
“There’d be days when my energy level was really low, and, you know, I’d just go ahead and tell my coaching staff, ‘Hey, you know what? I ate something bad. I just don’t have it today.’”
For a world traveler, getting the right treatment wasn’t always easy. It was often tough just to get his medication on the road.
Even when Maxey managed to get the drugs shipped to him, a complex web of laws and regulations in other countries sometimes barred him from taking delivery. Once, a customs official destroyed $4,500 worth of medication right in front of him.
After so many years with Crohn’s and numerous surgeries, including a major one at Emory University in Atlanta in 2018, Maxey says he has learned to be very clear with those closest to him about his needs.
“As graphic and as vulgar as it might be, you have to go through it so your loved ones know how to help take care of you. You can’t sugarcoat it. Otherwise you’re going to be in some serious trouble when you need help.”
But it’s also important, he says, to reassure those who care for you most.
“I mean, you’re definitely nervous because you know that this stuff can take you out,” Maxey says. “But at the same time, hey, you know what? We’re going to get through this. We’re going to figure it out. You know, this isn’t my first rodeo.”
For now, Maxey is waiting in limbo in Atlanta for the pandemic to pass. He hopes to play professional basketball for at least 2 more years.
Natalie Hayden got her diagnosis in July 2005, 2 months after finishing her undergraduate degree at Marquette University in Milwaukee, WI.
“Up until that point, I was a picture of health.”
Symptoms started soon after graduation. “I knew something was wrong because any time I would eat or drink anything, I was in horrible pain. So I just stopped eating and lost about 15 pounds.”
Hayden says that besides excruciating abdominal pain, she had fevers of 105 and was so worn out that she couldn’t climb the stairs of her parents’ house.
Finally, her worried mother, a nurse, rushed Hayden to the hospital. It took the emergency room doctor only a physical exam and a CT scan to declare that Hayen had Crohn’s. She was admitted immediately.
Hayden says she has blocked out much of those first blurry days. She remembers the shock. She remembers a lot of tears.
“The hardest part of the diagnosis is dealing with the change to your identity. You think of this disease as a scarlet letter. You feel as though you’re forever changed.”
Since her diagnosis 15 years ago, Hayden has built a career as a journalist and blogger and a rich family life with her husband, Bobby, and their two children, Reid and Sophia.
She also has gained a new perspective.
Having Crohn’s “doesn’t mean you can’t follow your career aspirations. It doesn’t mean you’re not going to find love. It doesn’t mean you can’t be a parent someday,” Hayden says. “You can do all those things with IBD. Your journey might just look a little bit different than your peers.’”
“The disease is a big part of you, it’s not all of you,” she says.
Hayden has been in remission since she had surgery in 2015. But she still has bad days.
“Don’t try to be a superhero and fight it at home. If you can nip it in the bud before it becomes a full-out flare, then you can save yourself a hospitalization.”
Something people don’t talk about enough, Hayden says, is the loneliness that can come with Crohn’s. Even supportive friends and family can’t quite grasp how it may shape every facet of your life.
The internet can offer a way to connect with others who truly understand.
“I just want people to know that they’re not alone in their journey,” Hayden says. “We’ve all been there in your shoes, and we understand the severity of what you’re going through.”
Vern Laine was extremely active and ice skated competitively while growing up in a small town in British Columbia, Canada. Then, in 1988, out of nowhere, he started getting terrible stomach pain that lasted for days at a time.
For months, Laine’s doctors suggested his symptoms were “just gas” or dismissed them as “in your head.”
When he finally got his diagnosis, the first thing Laine wanted to know was how to fix it.
“Unfortunately,” his doctor replied, “there is no cure.”
The shock of that answer took a long time to sink in fully, Laine recalls. That started a 3-decade journey in managing the effects of Crohn’s, both physical and mental.
One of the hardest parts of the disease is the uncertainty. “You could be fine for months and then you’re in the hospital. Sometimes it can hit in minutes.”
That, Laine says, is especially hard on relationships. “You can never be firm on plans — ever!”
Another challenge is that many people simply don’t understand how ill Crohn’s can make a person.
“The disease is invisible. Just because I don’t look sick, does not mean I’m not suffering inside.”
Even after multiple surgeries, including one for an ostomy to remove his waste in a pouch, some people tell him, “You don’t look sick.”
That can take a psychological toll, which is something Laine wished he knew more about in the early years of his disease. At one point, he tried to take his own life.
“Many doctors treat the symptoms and the disease itself and forget about the mental stress. There’s stigma and embarrassment behind having a bowel disease.”
Emotional support, whether from family and friends, group therapy, or one-on-one counseling, is vital to navigating life with Crohn’s, he says.
Over the years, Laine has turned to painting as his own art therapy.
“I can put paint to canvas and paint what I feel at that moment in time,” he writes on his blog.
“It’s helped me tremendously to divert any pain or thoughts of depression. It can help take my mind off things and I can be in my own world.”
Stephanie Hughes is a writer, triathlete, mom, and wife. Her journey with Crohn’s started when she was diagnosed in 1999 at 13 years old.
Though Hughes clearly has a sense of humor about her disease — her blog is called The Stolen Colon — there have been plenty of difficulties along the way.
One of the hardest moments, says Hughes, was in 2012, when she decided to have the surgery for a permanent ostomy, a hole in your abdomen that empties waste into a bag.
At the time, says Hughes, she was very sick and in and out of the hospital. Still, she knew that once she made the decision, there was no going back.
“I thought I was going to have to give up a lot in living with an ostomy, but the truth is that I gave up nothing and gained more than I had imagined.
“I have had an ostomy for over 8 years and it has dramatically increased my quality of life.”
For others struggling with the decision, she says, “Talk to your doctor and talk to someone who has lived with an ostomy. … I realize now that I had a flawed perspective on what living with an ostomy would be like prior to my surgery.”
There’s no doubt, says Hughes, that Crohn’s changed her life, but not always for the worse, she says.
“Living with a chronic illness will change your life. It will bring some of the biggest challenges you may ever face in your life, but it also brings the opportunity to find what’s important to you and to not let the lesser things in life distract you from those things that mean the most.
“It’s hard, and it’s OK to acknowledge that it’s hard … but I have found that experiencing the hard has helped me appreciate the good and the beautiful even more.”
May 10, 2024 – When we’re young, we take our macula for granted. At the center of our retina – the deepest layer of the eye that’s chock-full of photoreceptors and that confers color to our world – the macula is like a high-resolution camera. As light hits our eyes, the retina’s macula recasts our world in a bloom of color with astoundingly high visual sharpness.
But as you age, your vision dulls. What once stood out sharply becomes foggy, like condensation on a windowpane. After some time, a coal-black smudge or cloudy circular area begins to affect your central vision.
This effective blind spot widens over time if left untreated. What remains is a “macular hole” in the center of your retina.
This unfortunate series of events marks the advanced stage of age-related macular degeneration, a dangerous retinal disease that affects about 20 million people in the U.S., and nearly 200 million people worldwide.
And it’s not getting better. Estimates are that by 2040, the disease may affect nearly 300 million people worldwide. We are very limited in our ability to treat or prevent it. Read on for what to know.
First, What Causes Age-Related Macular Degeneration?
AMD’s causes are varied, and whether it will affect you is mostly determined by age and genetics, said Marco Alejandro Gonzalez, MD, an ophthalmologist and vitreoretinal specialist in Delray Beach, FL.
Because of the different cocktails that we have in terms of our genetic makeup, some people’s photoreceptor cells in the macula “basically start to shut down,” he said.
AMD’s development involves over 30 genes, and if you have a first-degree relative – parent, sibling, child – who has the disease, you’re three times more likely to get it, too.
Gonzalez explained how the expected rise to 300 million cases by 2040 is due mostly to improved diagnostic tools, along with the fact that the world is getting older and living longer. (Usually, an optometrist can detect signs of AMD during a routine eye exam.)
Eye experts still struggle to stop AMD’s most harmful sign – the cause of those muddy, milky, or even coal-colored circles in your central vision: geographic atrophy.
Geographic atrophy can occur in either of the two forms of age-related AMD: “dry” AMD and “wet” AMD.
Nearly every case of AMD begins as the dry kind, affecting 80% to 90% of AMD patients.
Retinal disease expert Tiarnán Keenan, MD, PhD, offered a vivid image of geographic atrophy for those who have dry AMD.
“As time passes, the circular patches of GA expand like a brushfire, taking more and more vision with it, often to the point of legal blindness,” he said.
A researcher in the Division of Epidemiology and Clinical Applications at the National Eye Institute, Keenan recently led a study that tested the efficacy of the antibiotic minocycline in slowing geographic atrophy expansion in dry AMD. The study operated on the grounds that the body’s immune system could be at play in developing the disease.
When your body’s immune system is overactive, microglial cells (central nervous system immune cells) can get into the sub-retinal space and possibly eat away at the macula and its sensitive photoreceptors.
Though minocycline had been shown to reduce inflammation and microglial activity in the eye in diabetic retinopathy, it didn’t slow the expansion of geographic atrophy or vision loss in patients with dry AMD during Keenan’s study.
When asked if microglial activity could have very little to do with the atrophy expansion, Keenan said it’s something to consider: “Maybe microglia are just there as bystanders clearing up the debris … so inhibiting them is less likely to slow down progression.”
In future drug trials, “maybe it’s possible the minocycline or another approach to target microglia would be helpful, but it would be needed in combination with some other therapy and be ineffective by itself,” he said.
Two Sides of the Same Disease
In dry AMD, Gonzalez compares macular degeneration to the loss of pixels on a screen. “Some of those pixels burn out … and that’s the way you lose vision classically in the dry form.”
Wet AMD is a more progressive form of the disease. It causes abrupt vision loss due to abnormal blood vessel growth.
“If you don’t treat wet AMD quickly, it’s game over,” warned Gonzalez. “Wet macular degeneration is the quicker process of vision loss because these blood vessels wreak havoc.” These new blood vessels bleed, causing fluid to build in the macula, which ultimately leads to scarring.
Gonzalez shed light on why wet AMD develops. “The wet form, for some reason, is the body’s last-ditch effort to try to kind of ‘help’ a dying macula. … When these blood vessels start to grow under the retina, they quickly destroy the architecture of the macula.”
Stopping the Bleeding in Wet AMD
Though wet AMD is rarer, it’s more treatable than dry AMD. Signs and symptoms can be eased with various therapies injected into the eye.
Putting it simply, Gonzalez said these therapies to treat wet AMD “all basically do the same thing. They make these new blood vessels regress temporarily before they cause damage to the macula.”
The injected medication clears away those blood vessels and restores the architecture of the macula. People can recover some vision in this way, but it’s only a temporary tune-up, and shots must be given as often as once a month.
“Degeneration of the cells is still the main problem. You’re not stopping that. But degeneration itself is a lot slower than actual vision loss associated with these blood vessels.”
The Struggle in Developing New Treatments
According to Keenan, “nobody has been able to stop geographic atrophy from happening” in either form of AMD. “So, that’s the main work in the field with trials.”
In December 2023, the FDA approved two new drugs: Syfovre and Izervay, both of which only slow geographic atrophy. Degeneration still happens, regardless.
Keenan explained how these two new drugs are “complement inhibitors … given by injection into the eye once a month or so.”
“Complement” refers to the body’s complement pathway, a trigger that activates a cascade of proteins in enhancing immune response.
Clinical trials showed Syfovre slowing the rate of geographic atrophy by up to 22% over 2 years, and Izervay up to 14% over 1 year.
Though these drugs are a new weapon against this troublesome affliction, they aren’t without their complications.
“Anytime you give an injection in the eye, there’s always the risk of an infection because you’re introducing something from the outside. So that’s the biggest risk,” explained Gonzalez.
An infection is uncommon, but potentially devastating, as you can lose your eye altogether. There’s also the chance of a damaging reaction to the shot.
“You have to pick and choose your patients,” said Gonzalez. “Not everybody is a good candidate for those new shots … and the patient is never going to see better. … It’s a harder sell than the ones for wet AMD.”
A Common Protective Measure
Keenan and Gonzalez both have a fair degree of confidence in reducing the risk of AMD with vitamin therapy.
As a bit of background on how vitamins were found to act as a sort of preventive measure, Gonzalez said, “In the early and late ‘90s, there were series of studies which were called the age-related eye disease studies.” These are now referred to as AREDS 1 and AREDS 2.
Researchers proved that a certain cocktail of vitamins slowed down degeneration. The most is a combo of antioxidants: vitamins C and E and lutein and zeaxanthin, all of which are in the AREDS 2 formula.
People who took these vitamins had a lower chance of losing their vision over the next 2 to 5 years. “[The combo] seems to be complementary and additive … with a combined treatment effect of 55% to 60%, an excellent safety record, and very low cost,” Keenan said.
Gonzalez recommends the AREDS 2 formula of vitamins to every patient of his. “It’s such an easy thing to take, and the downside is minimal.”
Unfortunately, if your genes make you more likely to have the condition, a change in diet or vitamin use could have no effect.
Dire? Possibly. But not all is lost in this fight.
Vigilance with AMD and What to Do Next if You’re Diagnosed
Gonzalez is adamant in educating his patients before time has run out on treating AMD. Recognition is key. “The most common reason a lot of these people get to me ‘too late’ is they don’t realize there’s a problem.”
He explained a typical scenario: “Let’s say you have macular degeneration in both eyes at different stages. One of your eyes starts developing wet macular degeneration … so the better eye takes over and you may not notice there’s a problem.”
Even after a patient is diagnosed with AMD, they usually see a specialist only twice a year. Gonzalez often tells his patients to cover one of their eyes to make sure their vision is intact in both eyes. “You’ll be able to pick up on subtle differences” in each eye, he said.
This type of self-care and vigilance can be the difference between successfully living with and treating the disease for the rest of your life, and trying to get help when it’s simply too late.
For wet AMD, as mentioned before, a round of injections is basically what everyone does. Without quick, invasive treatment, the point of no return approaches rapidly.
May 16, 2024 – Multiple U.S. agencies are working to contain the recent bird flu outbreak among cattle to prevent further spread to humans (beyond one case reported in early April) and use what we learned before, during, and after the COVID-19 pandemic to keep farm workers and the general public safe.
Fingers crossed, the bird flu will be contained and peter out. Or the outbreak could continue to spread among dairy cattle and other animals, threatening the health and livelihoods of farmers and others who work with livestock.
Or the virus could change in a way that makes it easier to infect and spread among people. If this happens, the worst-case scenario could be a new influenza pandemic.
With so many unknowns, WebMD brought together experts from four federal agencies to talk prevention, monitoring, and what the “what ifs” of bird flu might look like.
Communication with the public “about what we know, what we don’t know, and ways you and your family can stay safe is a priority for us at CDC,” said Nirav D. Shah, MD, JD, the CDC’s principal deputy director. “We at the federal level are responding, and we want the public to be following along.”
People should consult the websites for the CDC, FDA, U.S. Department of Agriculture (USDA), and the Administration for Strategic Preparedness and Response (ASPR) for updates.
It is essential to not only stay informed, but to seek trusted sources of information, Shah said during “Bird Flu 2024 – What You Need to Know,” an online briefing jointly sponsored by the CDC and WebMD.
An ‘Experimental Hamburger’
If one take-home message emerged from the event, it was that the threat to the general public remains low.
The retail milk supply is safe, although consuming raw or unpasteurized milk is not recommended. “While commercial milk supply is safe, we strongly advise against drinking raw milk,” said Donald A. Prater, DVM, acting director for the FDA’s Center for Food Safety and Applied Nutrition.
As for other foods, thoroughly cooked eggs are less risky than raw eggs, and the nation’s beef supply remains free of the virus as well.
For years, federal inspectors have purchased and tested meat at retail stores, said Eric Deeble, DVM, USDA deputy assistant secretary for the Office of Congressional Relations. So far, H5N1, the virus behind bird flu, has not been detected in beef.
The USDA took testing a step further and recently cooked ground beef from dairy cows in their lab. Using what Deeble described as an “experimental hamburger,” the agency showed cooking beef to 165 F or higher kills the virus if it ever becomes necessary.
The federal government now requires all cattle be tested and be free of bird flu virus before crossing any state lines. The government is also reimbursing farmers for veterinary care and loss of business related to the outbreak, and supply personal protective equipment (PPE) like gloves, masks, and face shields to workers.
Vaccination Not Recommended Now
Federal scientists know enough about H5N1 virus to create vaccines against it quickly if the need arises. It’s more about planning ahead at this point. “Vaccines are not part of our response right now,” said David Boucher, PhD, director of infectious diseases preparedness and response at the Administration for Strategic Preparedness and Response.
If the virus changes and becomes a bigger threat to people, “we have the building blocks to produce a vaccine,” Boucher added.
An event attendee asked if the seasonal flu shot offers any protection. “Unfortunately, the flu shot you got last year does not provide great protection from the avian flu,” Shah responded. “It might do a little bit … but that is the vaccine for seasonal flu. This is something more novel.”
Treatments Stockpiled and Ready
Antiviral medications, which if given early in the course of bird flu infection could shorten the severity or duration of illness, are available now, Shah said. The dairy farmer who was infected with bird flu earlier this year responded to oseltamivir (Tamiflu) treatment, for example.
When it comes to bird flu symptoms, the fact that the only infected person reported so far this year developed pink eye, also known as conjunctivitis, is interesting, Shah said. Officials would have expected to see more typical seasonal flu symptoms, he added.
“Influenza is not a new virus,” Boucher said. “With this strain of influenza, we are not seeing any genetic markers associated with resistance to antivirals. That means the antivirals we take for seasonal influenza would also be available if needed to treat H5N1.”
ASPR has stockpiled Tamiflu and three other antivirals. “We do have tens of millions of courses that can be distributed around the country if we need them,” he added.
“Influenza is an enemy we know well,” Boucher said. That is why “we have antivirals ready to go now and many types of PPE.”
Science in Action
The feds intend to stay on the case. They will continue to monitor emergency department visits, lab test orders, and wastewater samples for any changes suggesting a human pandemic risk is growing.
“While we’ve learned a great deal, there are still many things we do not know,” Deeble said.
Shah added, “As in any outbreak, this is an evolving situation and things can change. What you are seeing now is science in action.”
For the latest updates on bird flu in the United States, visit the CDC’s H5N1 Bird Flu: Current Situation Summary website.
May 16, 2024 – Multiple U.S. agencies are working to contain the recent bird flu outbreak among cattle to prevent further spread to humans (beyond one case reported in early April) and use what we learned before, during, and after the COVID-19 pandemic to keep farm workers and the general public safe.
Fingers crossed, the bird flu will be contained and peter out. Or the outbreak could continue to spread among dairy cattle and other animals, threatening the health and livelihoods of farmers and others who work with livestock.
Or the virus could change in a way that makes it easier to infect and spread among people. If this happens, the worst-case scenario could be a new influenza pandemic.
With so many unknowns, WebMD brought together experts from four federal agencies to talk prevention, monitoring, and what the “what ifs” of bird flu might look like.
Communication with the public “about what we know, what we don’t know, and ways you and your family can stay safe is a priority for us at CDC,” said Nirav D. Shah, MD, JD, the CDC’s principal deputy director. “We at the federal level are responding, and we want the public to be following along.”
People should consult the websites for the CDC, FDA, U.S. Department of Agriculture (USDA), and the Administration for Strategic Preparedness and Response (ASPR) for updates.
It is essential to not only stay informed, but to seek trusted sources of information, Shah said during “Bird Flu 2024 – What You Need to Know,” an online briefing jointly sponsored by the CDC and WebMD.
An ‘Experimental Hamburger’
If one take-home message emerged from the event, it was that the threat to the general public remains low.
The retail milk supply is safe, although consuming raw or unpasteurized milk is not recommended. “While commercial milk supply is safe, we strongly advise against drinking raw milk,” said Donald A. Prater, DVM, acting director for the FDA’s Center for Food Safety and Applied Nutrition.
As for other foods, thoroughly cooked eggs are less risky than raw eggs, and the nation’s beef supply remains free of the virus as well.
For years, federal inspectors have purchased and tested meat at retail stores, said Eric Deeble, DVM, USDA deputy assistant secretary for the Office of Congressional Relations. So far, H5N1, the virus behind bird flu, has not been detected in beef.
The USDA took testing a step further and recently cooked ground beef from dairy cows in their lab. Using what Deeble described as an “experimental hamburger,” the agency showed cooking beef to 165 F or higher kills the virus if it ever becomes necessary.
The federal government now requires all cattle be tested and be free of bird flu virus before crossing any state lines. The government is also reimbursing farmers for veterinary care and loss of business related to the outbreak, and supply personal protective equipment (PPE) like gloves, masks, and face shields to workers.
Vaccination Not Recommended Now
Federal scientists know enough about H5N1 virus to create vaccines against it quickly if the need arises. It’s more about planning ahead at this point. “Vaccines are not part of our response right now,” said David Boucher, PhD, director of infectious diseases preparedness and response at the Administration for Strategic Preparedness and Response.
If the virus changes and becomes a bigger threat to people, “we have the building blocks to produce a vaccine,” Boucher added.
An event attendee asked if the seasonal flu shot offers any protection. “Unfortunately, the flu shot you got last year does not provide great protection from the avian flu,” Shah responded. “It might do a little bit … but that is the vaccine for seasonal flu. This is something more novel.”
Treatments Stockpiled and Ready
Antiviral medications, which if given early in the course of bird flu infection could shorten the severity or duration of illness, are available now, Shah said. The dairy farmer who was infected with bird flu earlier this year responded to oseltamivir (Tamiflu) treatment, for example.
When it comes to bird flu symptoms, the fact that the only infected person reported so far this year developed pink eye, also known as conjunctivitis, is interesting, Shah said. Officials would have expected to see more typical seasonal flu symptoms, he added.
“Influenza is not a new virus,” Boucher said. “With this strain of influenza, we are not seeing any genetic markers associated with resistance to antivirals. That means the antivirals we take for seasonal influenza would also be available if needed to treat H5N1.”
ASPR has stockpiled Tamiflu and three other antivirals. “We do have tens of millions of courses that can be distributed around the country if we need them,” he added.
“Influenza is an enemy we know well,” Boucher said. That is why “we have antivirals ready to go now and many types of PPE.”
Science in Action
The feds intend to stay on the case. They will continue to monitor emergency department visits, lab test orders, and wastewater samples for any changes suggesting a human pandemic risk is growing.
“While we’ve learned a great deal, there are still many things we do not know,” Deeble said.
Shah added, “As in any outbreak, this is an evolving situation and things can change. What you are seeing now is science in action.”
For the latest updates on bird flu in the United States, visit the CDC’s H5N1 Bird Flu: Current Situation Summary website.
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