The rare genetic disorder trisomy 18, also known as Edward's syndrome, occurs when chromosome 18 is duplicated three times instead of two times in a person. In addition to heart defects, growth problems, intellectual disabilities, and low survival rates, this extra chromosome causes a variety of mental and physical abnormalities. There are about one in every 5,000 live births with trisomy 18, and it affects more girls than boys.
In order to cope with the complex and often life-threatening health issues associated with trisomy 18, patients and their families need constant medical care and support. Although the traditional health care system is fragmented, impersonal, and expensive, it may not be able to provide the best care for patients with trisomy 18.
Direct Primary Care (DPC) is a new model of health care that provides primary care services that are more personalized, accessible, and affordable. A patient pays a monthly fee to their primary care physician, who offers unlimited access, longer visits, and comprehensive care for a monthly fee. By not accepting insurance, DPC doctors can avoid administrative hassles and focus on their patients' needs instead.
DPC can offer many benefits for trisomy 18 patients and their families, such as:
Providing individualized care for trisomy 18 patients with multiple and complex health issues is easier with DPC doctors, as they have more time and flexibility. By collaborating with specialists, monitoring the patient's condition, and adjusting the treatment plan as necessary, DPC doctors can also help patients and their families cope with the disorder by providing more preventive care and education.
DPC patients have access to their doctors anytime, anywhere, by phone, text, email, or video chat. They can get same-day or next-day appointments, and longer visits as well. This means trisomy 18 patients can receive the care they need when they need it without having to wait weeks or months to see their doctor.
All primary care services are covered by a flat monthly fee for DPC patients. Due to their direct negotiations with providers, DPC doctors can also offer lower prices for labs, imaging, medications, and referrals. They do not have to worry about copays, deductibles, or surprise bills. In this way, trisomy 18 patients will be able to save money and reduce their medical costs.
DPC can help trisomy 18 patients manage their disorder in a more personalized and holistic way. Here are some examples of how DPC can do that:
In order to help patients and their families better understand the causes, risks, and implications of trisomy 18, DPC doctors can offer genetic counseling. They can also offer prenatal testing and screening options for pregnant women who are at risk of having a baby with trisomy 18.
DPC doctors can provide palliative care for trisomy 18 patients who have a limited life expectancy, as well as support the family in making end-of-life decisions and coping with grief.
To help trisomy 18 patients and their caregivers cope with the emotional, social, and practical challenges of living with the disorder, DPC doctors can provide family support. In addition, they can help them find support groups and resources, such as the Trisomy 18 Foundation.
Patients and their families with trisomy 18 can have a better chance of overcoming it through DPC. DPC offers them the care, support, and hope they need to cope.
As Helen Keller once said, “Although the world is full of suffering, it is also full of the overcoming of it.”
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