PicnicHealth | Join the #ShareYourRare Campaign!
Amplify Your Voice: Join the #ShareYourRare Campaign!
By
PicnicHealth
Feb 01, 2024 • 1 min read
In honor of Rare Disease Awareness Month, we're thrilled to kick off our #ShareYourRare campaign. We believe that your stories matter, and through #ShareYourRare, we want to highlight the often-overlooked challenges and stories of those who are living with a rare condition.
Contest Details:
We invite rare disease warriors to share their stories through videos or text. Each submission serves as an entry for a chance to win one of four exciting prizes:
- 3 Winners: $100 Visa Gift Card each
- 1 Grand Prize Winner: A PicnicHealth account, with FREE record collecting for 6 months + $100 Visa gift card!
Video submissions count as three entries, while text submissions count as one. To boost your chances of winning, we're offering an additional 5 entries to those who share their post on social media and tag PicnicHealth! Submissions are open until February 27th, with winners announced on February 29th, Rare Disease Day.
How to Participate:
To share your story and enter the contest, click here
Thank you for being an integral part of the #ShareYourRare campaign. Your unique experiences contribute to highlighting the strength and resilience of the rare disease community. We look forward to hearing your inspiring stories! Together, let's make a difference and bring attention to the stories that truly matter.
We know that every person's story is unique and deserves to be heard.
Join our early breast cancer registry to be counted and share your story with research.
Create a List
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.
Ensure You Have the Appropriate Legal Status
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.
Gather and Organize the Medical Records in One Place
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.
Review the Medical Records to be an Informed Advocate
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
Together, we can make a difference.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
1. Build a support network.
When 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.
2. Stay organized.
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.
3. Explore treatments and clinical trials.
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.
4. Make time for self-care.
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.
Having trouble managing your loved one's medical records?
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
LC-FAOD Odyssey: A Preliminary Analysis, presented at INFORM 2021
Data from real-world medical records:
(from 13 patients with LC-FAOD)
16 yrs old
Median age at enrollment
38% Female
15 providers / patient
7.5 years of data / patient
Data from patient-reported outcome (PRO) survey
(from 13 patients with LC-FAOD)
Tip: Download or print the poster at the end of this article to review before your next appointment!
However, it's important to consult with a healthcare provider or registered dietitian to determine the appropriate amount of protein for your individual needs. In general, a diet with moderate protein intake (about 0.8 grams per kilogram of body weight per day) is recommended for people with kidney diseases.