Today is Rare Disease Day, an annual observance to raise awareness about uncommon and often misdiagnosed medical disorders.

Support for families and loved ones of individuals with rare diseases is often limited simply because of their lack of familiarity. One such hereditary condition, known as Hereditary Hemorrhagic Telangiectasia or HHT, affects more than 600 Hoosiers, according to the Indiana Hemophilia and Thrombosis Center.

HHT can cause spontaneous and chronic nosebleeds, and only 20% are estimated to know they have it. Early detection is important, said Dr. Magdalena Lewandowska, a hematologist at the center.

"We confirm this with genetic testing," she said. "So, about 90% of patients who have HHT have a gene mutation. There's a 50% chance of inheriting it if one of your parents is affected with HHT."

She said common symptoms can include malformed blood vessels in the brain, lungs and liver, or pin-sized reddish-purple spots on a person's skin.

An additional barrier for patients with rare diseases is locating a specialist to treat them. The Undiagnosed Diseases Network Foundation defines an "ultra-rare" disease as one that affects one in 50,000 people.

Doctors face challenges in diagnosing HHT and other unique illnesses because a specific disease may not be verifiable, due to very little research about it in medical journals. Patients can be frustrated when the necessary tests are unavailable, or the disease mimics another disorder, leading to misdiagnosis.

In 2022, registered nurse Abby Terzini had symptoms of HHT. She said she was in denial - although three family members had the disease.

"I just started having more nosebleeds," Terzini said. "'It's just allergies' - or, 'It's just this, that or the other, it's not a big deal. I'm not having any big issues with this, so I don't need to go to the doctor.'"

Terzini said she eventually decided to get help from doctors who prescribe "bleed kits" containing medication to prevent or lessen the severity of a nosebleed. In 2024, it was reported that a drug used to treat bone marrow cancer and Kaposi sarcoma - a cancer that affects the blood vessels and lymphatic system - is showing promising results for HHT as well.

People who are part of the Deferred Action for Childhood Arrivals program, known as DACA, will be dropped from their CoveredCA health plans at the end of August.

The move comes after the Trump administration changed a Biden-era definition of "lawfully present" to revoke health care eligibility for thousands of immigrants.

Christine Smith, policy and legislative advocate for the nonprofit Health Access California, said people only have a few weeks to get medical appointments in before their coverage ends.

"If you're enrolled in Covered California and you're a DACA recipient, the Trump administration just ended your coverage," Smith emphasized. "People should use as much of your health care as you can before the August 31st deadline."

The Centers for Medicare and Medicaid Services defended the move, saying it will save taxpayers money. CoveredCA estimated the change affects about 2,400 DACA recipients in the state who make too much to qualify for Medi-Cal and have jobs not providing health insurance. They can still buy private insurance but it is much more expensive. People who prepaid for their coverage can seek a refund.

Smith predicted it will be a blow not just to those who lose coverage but to the state's health care system as a whole.

"The lines in the ERs are going to be longer because people are not going to be able to get affordable preventive care," Smith projected. "They're just going to get sicker and then end up in the ERs. People will overall incur more medical debt. Hospitals will have more uncompensated care."

The change is nationwide. As of mid-July, about 538,000 people in the DACA program across the U.S. are ineligible to enroll in any state-based insurance marketplace and are unable to access premium subsidies or cost-sharing assistance.

Artificial intelligence is appearing more prominently in many aspects of life and research suggests older populations are curious, yet remain wary of using the technology in their everyday lives.

According to Stats Indiana, there are more than 1.5 million Hoosiers aged 65 and older, or 18% of the state's population. Experts said it is likely the demographic will use AI in some form in the next few years, either by choice or necessity.

Dr. Shaun Grannis, vice president of data and analytics for the Regenstrief Institute on Aging, said AI offers real benefits.

"It can reduce loneliness through conversation, provide reminders for medications and appointments," Grannis outlined. "It can support cognitive stimulation via games, storytelling, news updates."

The technology can also offer a low-pressure way to access information on public services, he added, which is valuable for those with mobility issues or those who feel intimidated by technology.

Grannis cautioned any tool which can be used for good can also lead to problems. He noted AI can create a false sense of companionship and mask social isolation. Overdependence is a legitimate concern, he argued, if the technology becomes a "crutch" for all forms of interaction.

"All cognitive activities or decision-making, it can actually lead to and create a negative feedback loop, lead to a decline in engagement and even basic self-management skills," Grannis explained. "This is risky."

Grannis believes one solution is designing AI systems to complement, not replace, human interaction. He stressed it can be done though building broader support ecosystems including family, friends, caregivers and community services. Grannis emphasized it would encourage real-world activity, prompting the user to go for a walk, call a grandchild or attend a local senior event.

If you have an extra five minutes, you can save a life because you can learn cardiopulmonary resuscitation at no cost from a new mobile, hands-only CPR kiosk.

The new kiosk is in the lobby of Saint John's Health Center in Santa Monica. The machine's touch screen gives a brief overview of hands-only CPR and you can practice right there, on a mannequin.

Dr. Rigved Tadwalkar, cardiologist at St. John's, said it is an easy way for people to get more comfortable giving chest compressions in an emergency.

"It's a lot like a video game but of course, a lot more important than a video game," Tadwalkar pointed out. "It gives real-time feedback about the depth and rate of compressions, proper hand placement, which are all factors that influence the effectiveness of CPR."

The American Heart Association operates the St. John's mobile kiosk and a stationary model at L-A-X with support from the hospital. Santiago Canyon College in Orange County also has a mobile hands-only C-P-R kiosk now through September, sponsored by Edwards Lifesciences.

Steven Munatones, an Orange County business owner, said he survived what's known as a "widowmaker" heart attack which led to cardiac arrest nine years ago, thanks to his 17-year-old son, who gave him immediate CPR with instructions from a 911 operator.

"You don't have to put your mouth to anybody's mouth," Munatones explained. "You just put your hand on their chest and pump. He saved me, and others can do the same, anywhere. So, it's absolutely a lifesaving, heroic act that anybody can do."

Statistics show 350,000 Americans suffer from cardiac arrest outside a hospital each year and about 90% die, in part because they do not receive CPR. About 70% of those cardiac arrests happen at home, so people often depend on family or friends to give CPR before an ambulance arrives.