PicnicHealth has worked with numerous people who suffer serious or chronic diseases. In their everyday lives, they often undergo treatments, take medication, and follow strict medical regimens to try to manage their health as effectively as possible. Patients who suffer from diseases that don’t yet have a cure in the medical community hold on to hope that a cure could be found in the future. Or, at the very least, they hope that new developments and treatments may be discovered to improve the quality of their lives and that of other sufferers of the disease.
One such chronic disease is lupus, a condition that affects 1.5 million Americans and 5 million people worldwide, primarily women. Many people who don’t have lupus may have heard of the disease thanks to high profile individuals who also have the condition and promote awareness of it. Selena Gomez, Lady Gaga, and Toni Braxton are just some of them.
But what is lupus?
Lupus is an autoimmune disease. In a healthy immune system, the body’s white blood cells protect it from foreign intruders, such as viruses and bacteria. However, when a person has an autoimmune disease, those defenders of the body end up attacking healthy cells and tissue within the body, causing inflammation or damage. In the case of lupus, the disease causes inflammation and pain through any area of the body. It commonly affects a person’s joints, skin, and internal organs.
Lupus has a range of symptoms because it can affect just about any part of the body. It’s common among women aged 15 to 44 and can develop in any race or ethnicity. A person can’t “catch” lupus or give it to someone else. Still, there’s no cure for this disease, triggering a lifelong regime of treatment to control the symptoms.
Even though there’s no cure as of yet, doctors are still researching how a person can develop lupus as well as other ways to improve treatment to minimize symptoms and keep the disease in remission for longer periods of time.
According to experts, 2019 was a banner year for developing drugs that will help treat lupus. Two potential new treatments have reported some promising and positive results that made the researchers hopeful for progress.
Some of them are:
These new drugs and treatments are the work of intensive study in the field of lupus research. The fact that many of them have shown promise, especially so recently, shows potential that great strides may be made in the treatment of this disease. Sooner rather than later, people who suffer from different types of lupus could have better medical care and treatment, leading to better lives.
Part of understanding and finding better treatments for lupus is through the careful study of patient records and tests. PicnicHealth makes it easier to get your complete medical records to aid in managing lupus. PicnicHealth also supports research on lupus by structuring real-world evidence datasets from anonymized medical records of real people living with lupus in the real world. Visit PicnicHealth.com to sign up for a free PicnicHealth account if you have lupus.
Empower people to own their medical records. Advance medicine. We’re a passionate group of doctors, patients, data nerds, engineers, and builders, who believe in making something real that changes lives today and in the future.
Sign UpJoin our early breast cancer registry to be counted and share your story with research.
Learn More
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)
We hope you found this session informative! Sign up for PicnicHealth’s Alzheimer’s research program below.
Join Now
Download this list to save onto your phone or print it out for your fridge!
Download this poster to save onto your phone or print it out for your fridge!
Explore the essential takeaways from Victoria's Webinar, along with some resources that she shared.
