‘It’s About More Than Just Me’

By Taylor Kane
Jun 25, 2021 • 2 min read

Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

When Julianne was in seventh grade, her back started to ache. She saw a doctor, but he wasn’t concerned: “He told me that kids my age get back pain.” The following year, she started experiencing headaches, which she calls a “blessing in disguise.” Her headaches were so severe that was hospitalized and had an MRI. Based on that MRI, doctors thought Julianne had cancer, but specialists later determined her actual diagnosis. While Julianne’s feelings have evolved over time, she describes her immediate reaction as “disappointed, angry, upset — all of those things, to be honest.”

Gorham-Stout disease (GSD) is a rare condition that falls under the umbrella of complex lymphatic anomalies, or CLAs. GSD causes the bones of affected individuals to destruct and become absorbed into surrounding tissues, which can lead to pain, swelling and frequent fractures. The severity of symptoms varies from one patient to another and is often dependent upon the specific bones involved.

At first, Julianne spent a lot of time on the internet, “reading horror stories” about her condition. Now, she feels less drawn to internet searches she knows will stress her out and more drawn to maintaining a sense of balance. She says her life has improved overall in the three years since her diagnosis, because of treatment that helps manage her pain.

Nonetheless, Julianne still struggles with coming to terms with her diagnosis and how it might impact her future. “Acceptance is very difficult,” she says. She hasn’t met any other people with GSD yet and is hesitant to start attending events within her rare disease community. “If I go,” she says, “then I’m really accepting everything.”

Julianne explains that her mom has been very invested in GSD and is the one who told her about AllStripes. Julianne was initially unsure if she wanted to sign up for AllStripes, but in the end felt like it was the right thing to do. “These diseases really need a lot of awareness, and I don’t want to let my emotional struggles stand in the way. I don’t want to hinder progress — I want to be a part of it. Because it’s about more than just me.”

Today, Julianne is in high school and starting to think about applying to colleges. When Julianne meets new people in new places, she doesn’t usually tell them about her diagnosis. “I don’t bring it up, because it’s not something you can see,” she explains. Still, she wishes more people understood that some illnesses are “invisible,” and just because she doesn’t look sick on the surface doesn’t mean her struggles are not important.

While she is still navigating her young adult life with a rare disease, she has a piece of advice for anyone with health concerns. She recommends always getting second opinions from doctors: “Keep insisting if you think something is wrong.” If Julianne’s headaches had not landed her in the hospital, she is unsure when she would have learned of her rare condition and been able to start treatment.

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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

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?

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