In 2004, the US Surgeon General and the Department of Health and Human Services launched a public health campaign called the Family History Initiative and designated Thanksgiving as National Family Health History Day.
The purpose of this day is to encourage family members to talk about their health histories as they gather for the holiday. Talking about health can be difficult, but it’s an important conversation for families to have.
Both common and rare diseases can run in families. Having a family history of a certain disease doesn’t mean you will definitely develop the disease, but you may be at higher risk, especially if the disease has a genetic component. Understanding these potential risks can help you and other family members prepare for the future and take action.
About 1 in 10 people in the US has a rare disease and over 10,000 rare diseases have been described, with more being identified every year. A large portion of these are genetic, meaning they can be inherited and affect multiple generations in the same family. Some rare diseases are caused by pathogenic variants in a single gene, while others involve a combination of genetic and environmental factors.
Talking to loved ones about health histories can help provide insights into your personal health journey. It can even be a huge forward leap in the path to a diagnosis. It’s also very important to talk to a health care provider about your family health history and any symptoms you may be experiencing. The provider may advise you on steps you can take, such as lifestyle changes, health screening or genetic testing.
There are tools that can help families track and update their health history. My Family Health Portrait is a free online resource created by the US Surgeon General and the Department of Health and Human Services to help families organize their health information and easily share it with other family members and medical providers.
This holiday season, start the conversation about your family health history.
References:
https://www.joyce.edu/blog/national-family-health-history-day/
https://www.genome.gov/Health/Family-Health-History/Patients-Families
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List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
Learn MoreWhen you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.
There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
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