How a Mother of Three Manages Sickle Cell

Kelsey Thompson
March 31, 2020
Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

As a single mother of three young daughters diagnosed with sickle cell disease, Mapillar’s life is busier than most. In addition to helping with homework, attending after-school activities and scheduling play dates, Mapillar also has to make time for regular doctor’s visits and organizing records for doctors and medical insurance. 

At first, Mapillar says, navigating life as a single parent of children with sickle cell was lonely. It often felt like there was no one to turn to for support or resources. Inspired by her daughters and hoping to be a resource for others, Mapillar started MTS Sickle Cell Foundation to “increase the public’s awareness of sickle cell anemia” as well as to provide support to families affected by the disease.

“I decided to be that change I wanted to see,” said Mapillar, “I’m doing for other families what I wish others had done for me—helping families pay their rent, food, expenses. We offer support in the US but we also have international reach. Our community on Facebook builds morale and features sickle cell warriors for people around the world.” 

More recently, Mapillar made another life-altering change: she signed up for PicnicHealth. She was immediately impressed by how easy the platform was to use and how many of her challenges it addressed. The most important for a busy mom like her is the time and effort she saves.

“As a caregiver, I can organize my profile so all my children’s records are stored under one account,” she said. “For me, right now, even that little bit is huge. I don’t have to log in and out of different accounts. That’s wonderful.”

She also noted what a relief it is to know that she can keep her daughters’ medical timelines organized into adulthood. Previously, any platforms she used would expire once her children left pediatrics.

Beyond the technical details, though, Mapillar said that what makes PicnicHealth stand out the most is their dedication to their customers. She finds that especially impactful as someone whose life is impacted by chronic illness. 

“Our issue is that nobody cares or is paying attention to us,” she said, “PicnicHealth says ‘we get it.’ They are very receptive to ideas for improvement. As a company, their approach is to ask if they can have a seat at YOUR table.”

Finally, Mapillar is excited about PicnicHealth’s partnerships that provide user data to support research and clinical trials. As someone who is used to advocating for her community of sickle cell warriors, she appreciates the need for data to support new initiatives and treatments. 

“We’re in a data-driven world,” she said, “PicnicHealth goes to the root of that issue.”


Kelsey Thompson

Kelsey Thompson is a writer for PicnicHealth and social media expert.

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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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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.

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