5 Tips for Better Doctor's Visits with PNH

The PicnicHealth Team
July 19, 2022
Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

Erin Fortin is a rare disease patient advocate and PicnicHealth ambassador. She understands firsthand how difficult it can be to feel prepared for your doctor’s appointments. Over the years she’s developed a few best practices that have worked for her.


Living with a rare disease brings you to a doctor’s office more than the average person. To make the most of your time with your doctor, it is important to be prepared, listen, and speak up in order to build rapport with them. Here are my five tips to help you do this and improve your next doctor’s visit:

  1. Take notes. When talking to a doctor, it is easy to nod and agree with everything they are saying. It may all make sense at that moment, but the second you leave the office, so much information is forgotten. Taking notes on your phone or in a notebook helps ensure you have all the information to look back on if you forget what is discussed.
  2. Organize and keep track of your medical records. Having your records and imaging readily available, especially if you are seeing a new doctor, is extremely helpful not only for the doctor, but also yourself. Doctors will want to review your history, but you yourself may want to review your records to mark down how you physically feel and compare them to the actual testing. Programs like PicnicHealth’s Timeline make it easy to integrate your medical records between all your doctors (PNH-related or not), hospital visits, lab work, etc., and keep them readily available in one place.
  3. Keep a running list of questions between appointments. Whenever a question pops into your head, write it down! Bring that list to your appointment in whatever form is easiest for you; write them out, keep them stored on your phone, or even print them out so you can write the answers next to each question as you ask your doctor. Listen to your doctor, but remember you do not have to be a silent participant. Try to make sure appointments feel like a discussion rather than a one-sided lecture. Don’t forget, it’s your health, and no one knows your story better than you do.
  4. Stay informed. You are your best advocate, staying informed about PNH news is a great way to understand the disease and any opportunities you might have for new treatments. There are also low-effort ways to participate in PNH research with observational research studies. PicnicHealth is a great platform for both understanding your medical history and contributing to observational research.
  5. Don’t be intimated. Your doctor may have extensive education and multiple degrees, but don’t be nervous around them, they are humans too, and are there to help you. The more relaxed you are, the easier it is to open up and give them the information they need to give you the best care.

Are there any tips that stood out to you that you haven’t thought of before? Learning tips and tricks from other patients, especially when they can advise what has and hasn’t worked for them is the fastest way to incorporate new techniques in making your life easier with PNH. So go out there and prepare for your next doctor’s appointment; your future self will thank you for having everything ready to go!



The PicnicHealth Team

About PicnicHealth

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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

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Together, we can make a difference.

Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association

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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.


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.


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.


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.

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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)

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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.

Learn more about contributing to IgAN research with PicnicHealth. 

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Keep an Eye on These Test Results

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Resource Flyer

Explore the essential takeaways from Victoria's Webinar, along with some resources that she shared.

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Pre-Appointment Worksheet

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