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.

Republican lawmakers are considering billions of dollars in cuts to Medicaid. But a new report finds those spending cuts might impact health-care coverage for thousands of Maryland military families.

The report by the Georgetown Center for Children and Families finds more than 850,000 people enrolled in Medicaid have military health insurance, known as TRICARE, as their primary coverage. One in 10 children of service members with TRICARE is also enrolled in Medicaid.

Joan Alker, executive director of the Georgetown University Center for Children and Families, said Medicaid is important for service members with children who require more intensive health care.

"The TRICARE benefit package just isn't enough, so Medicaid is making TRICARE work for those families by covering the high cost of services and some benefits that those children otherwise would not have access to," Alker explained.

Republicans in Congress are trying to reel in what they view as out-of-control spending by $2 trillion in the next budget. But cuts to Medicaid are not universally agreed upon among Republican lawmakers.

Medicaid also serves 40% of children in the U.S. with a benefit that allows them to receive preventive and ameliorative care. That benefit began after a military report in the 1960s found young men were not qualified for military service in Vietnam because of preventive medical issues during their childhoods.

Retired Army Brigadier General George Schwartz said Medicaid cuts could have a negative impact on recruiting numbers as well. If troops lack proper coverage for their families, he thinks they may seek other career paths that can provide that coverage.

"As those young people reach the age where they're eligible for military service, the military is competing with private industry and all sorts of organizations for these young people. From a mission readiness point, this is a matter of national security," Schwartz contended.

Maryland is home to more than 100,000 active-duty service members and more than 35,000 military-connected children in the state.

With Mother's Day coming up, some Pennsylvania lawmakers are backing a set of bills that could help improve maternal health.

The Black Maternal Health Caucus introduced the updated "PA Momnibus 2.0" package in April, focused on tackling disparities in maternal health care by improving access to services.

Black women in the state are nearly twice as likely to die from childbirth complications. Rep. La'Tasha D. Mayes, D-Allegheny County, said 93% of maternal deaths are preventable.

"All the bills are for all moms, and because we know when we fix and address and take on maternal mortality and morbidity for Black moms, we solve it for every mom and birthing person in the Commonwealth," she explained.

The nine-bill package builds upon a 2024 "Momnibus" introduced by Mayes and Reps. Morgan Cephas and Gina Curry, both Republicans. Mayes said the caucus is working towards moving the bills toward votes, and then action in the Senate.

Two of the measures would expand access to blood pressure monitors and ensure they are covered through private insurance and Medicaid. Mayes added another measure would expand the reach of midwives, who provide care throughout pregnancy and childbirth, as well as postpartum.

"The Midwifery Practice Innovation bill that's going to help us advance midwifery as an occupation in this commonwealth, because it's very challenging to become a midwife, as well as be able to practice fully in a way that can serve moms," she continued.

The "Momnibus" also includes supports for nursing mothers, and invests in a Maternal and Newborn Supply Kit program, and maternal-health deserts. Mayes says more than 12% of women have no birthing facility within 30 minutes of their home, and Black women are three times more likely to die during or after birth compared with other women.

A new study showed costs are rising for caring for Hoosiers with Alzheimer's disease and forms of dementia.

The report indicated nearly 122,000 residents age 65 and older are living with the health conditions. The 2025 Alzheimer's disease Facts and Figures report showed Indiana has 219,000 unpaid family caregivers, who cost the state almost $7 billion annually.

Natalie Sutton, executive director of the Greater Indiana chapter of the Alzheimer's Association, said knowing the difference between the two disorders is important for an accurate diagnosis.

"Dementia is an umbrella term that represents a set of symptoms that are known with cognitive impairment, memory loss, and ultimately an impact on activities of daily living," Sutton explained. "Alzheimer's disease is a progressive brain disease that is the most significant cause of someone developing dementia, or those symptoms that we know."

The timing of a diagnosis can influence the quality of life for someone with Alzheimer's disease and dementia symptoms, which can be present in the brain for years prior to detection. Alzheimer's and dementia are unique and personal illnesses, Sutton pointed out, so the frequency and type of care provided should be tailored to a patient's needs.

Forgetting what day it is or misplacing routinely used items are often mistaken for general age-related changes instead of Alzheimer's or dementia. The report found almost four of five Americans would want to know if they have the disease before symptoms surface due to concerns over how a diagnosis could affect daily activities. Sutton noted science is addressing the concerns.

"We can detect and diagnose Alzheimer's with biomarkers like imaging and cerebral spinal fluid, and there are blood tests now that are being used in research settings that are proven to be highly effective," Sutton outlined.

In 2024, Indiana passed a bill requiring insurance companies to cover biomarker testing. Sutton added two Food and Drug Administration-approved treatments to slow the progression of Alzheimer's are covered by most insurance companies and Medicare.

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